{ "schema_version": "2.0.0", "generated": "2.0.0-seed", "license": "CC BY 4.0", "harmonisation_ruleset": "pais-harmony-v1", "pathogens": [ { "id": "sars-cov-2", "name": "SARS-CoV-2", "taxon": "Betacoronavirus", "class": "virus", "vector": "respiratory", "endemic_regions": [ "global" ] }, { "id": "sars-cov-1", "name": "SARS-CoV-1", "taxon": "Betacoronavirus", "class": "virus", "vector": "respiratory", "endemic_regions": [ "historical (2003 outbreak)" ] }, { "id": "dengue-virus", "name": "Dengue virus", "taxon": "Orthoflavivirus", "class": "virus", "vector": "Aedes mosquito", "endemic_regions": [ "tropics", "subtropics" ] }, { "id": "chikungunya-virus", "name": "Chikungunya virus", "taxon": "Alphavirus", "class": "virus", "vector": "Aedes mosquito", "endemic_regions": [ "Africa", "Asia", "Indian Ocean", "Americas" ] }, { "id": "ross-river-virus", "name": "Ross River virus", "taxon": "Alphavirus", "class": "virus", "vector": "mosquito", "endemic_regions": [ "Australia", "Pacific" ] }, { "id": "west-nile-virus", "name": "West Nile virus", "taxon": "Orthoflavivirus", "class": "virus", "vector": "Culex mosquito", "endemic_regions": [ "Americas", "Europe", "Africa", "Middle East" ] }, { "id": "zika-virus", "name": "Zika virus", "taxon": "Orthoflavivirus", "class": "virus", "vector": "Aedes mosquito", "endemic_regions": [ "tropics" ] }, { "id": "ebola-virus", "name": "Ebola virus", "taxon": "Orthoebolavirus", "class": "virus", "vector": "direct contact", "endemic_regions": [ "West Africa", "Central Africa" ] }, { "id": "epstein-barr-virus", "name": "Epstein-Barr virus (EBV)", "taxon": "Lymphocryptovirus", "class": "virus", "vector": "saliva", "endemic_regions": [ "global" ] }, { "id": "coxiella-burnetii", "name": "Coxiella burnetii (Q fever)", "taxon": "Coxiella", "class": "bacterium", "vector": "aerosol (livestock)", "endemic_regions": [ "global" ] }, { "id": "giardia-duodenalis", "name": "Giardia duodenalis (lamblia)", "taxon": "Giardia", "class": "protozoan", "vector": "faecal-oral (water)", "endemic_regions": [ "global" ] }, { "id": "mixed-ebv-rrv-cburnetii", "name": "Mixed (EBV / Ross River virus / Coxiella burnetii)", "taxon": "multiple", "class": "mixed", "vector": "multiple", "endemic_regions": [ "Australia" ] }, { "id": "borrelia-burgdorferi", "name": "Borrelia burgdorferi (Lyme disease)", "taxon": "Borrelia", "class": "bacterium", "vector": "Ixodes tick", "endemic_regions": [ "temperate North America", "Europe", "Asia" ] }, { "id": "pandemrix-as03-h1n1", "name": "Pandemrix (AS03-adjuvanted H1N1 influenza vaccine)", "taxon": "vaccine", "class": "vaccine", "vector": "intramuscular injection", "endemic_regions": [ "Europe (2009-10 pandemic campaign)" ] }, { "id": "campylobacter-ecoli-walkerton", "name": "Campylobacter jejuni / E. coli O157:H7 (Walkerton outbreak)", "taxon": "multiple", "class": "mixed", "vector": "faecal-oral (contaminated water)", "endemic_regions": [ "global" ] }, { "id": "covid-19-vaccine", "name": "COVID-19 vaccine (mRNA / spike-based)", "taxon": "vaccine", "class": "vaccine", "vector": "intramuscular injection", "endemic_regions": [ "global (2021- vaccination campaigns)" ] } ], "instruments": [ { "id": "chalder-fatigue-scale", "name": "Chalder Fatigue Scale", "abbreviation": "CFQ", "domain_measured": "fatigue", "validated_for": "general fatigue" }, { "id": "sf-36", "name": "Short Form-36 Health Survey", "abbreviation": "SF-36", "domain_measured": "quality of life / function", "validated_for": "general health status" }, { "id": "checklist-individual-strength", "name": "Checklist Individual Strength", "abbreviation": "CIS", "domain_measured": "fatigue severity", "validated_for": "chronic fatigue" }, { "id": "rome-criteria-ibs", "name": "Rome criteria for irritable bowel syndrome", "abbreviation": "Rome II/III", "domain_measured": "irritable bowel syndrome", "validated_for": "functional GI disorders" }, { "id": "somatic-symptom-self-report", "name": "Structured symptom questionnaire (author-defined)", "abbreviation": "author-defined", "domain_measured": "somatic symptoms", "validated_for": "not_reported" }, { "id": "polysomnography", "name": "Overnight polysomnography with EEG", "abbreviation": "PSG", "domain_measured": "sleep architecture", "validated_for": "sleep disorders" }, { "id": "brighton-gbs-criteria", "name": "Brighton Collaboration criteria for Guillain-Barré syndrome", "abbreviation": "Brighton", "domain_measured": "GBS diagnosis", "validated_for": "GBS case ascertainment" } ], "measures": [ { "id": "sym:fatigue", "kind": "symptom", "label": "Fatigue", "domain": "fatigue_pem", "ontology": { "hpo": "HP:0012378", "snomed": "84229001", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "fatigue", "tiredness", "asthenia", "lassitude", "exhaustion", "fatigue or muscle weakness" ], "boundary_note": "Never merged with sym:post-exertional-malaise, even where the source conflates them.", "unit": null, "unit_ucum": null }, { "id": "sym:post-exertional-malaise", "kind": "symptom", "label": "Post-exertional malaise", "domain": "fatigue_pem", "ontology": { "hpo": null, "snomed": "1217738000", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "post-exertional malaise", "PEM", "post-exertional symptom exacerbation", "PESE", "relapse after exertion" ], "boundary_note": "Never merged with sym:fatigue.", "unit": null, "unit_ucum": null }, { "id": "sym:cognitive-dysfunction", "kind": "symptom", "label": "Cognitive dysfunction", "domain": "neurocognitive", "ontology": { "hpo": "HP:0100543", "snomed": "386806002", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "cognitive dysfunction", "brain fog", "impaired concentration" ], "boundary_note": "Concentration/processing/executive impairment; distinct from sym:memory-impairment.", "unit": null, "unit_ucum": null }, { "id": "sym:memory-impairment", "kind": "symptom", "label": "Memory impairment", "domain": "neurocognitive", "ontology": { "hpo": "HP:0002354", "snomed": "386807006", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "memory troubles", "memory problems", "forgetfulness" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "sym:sleep-disturbance", "kind": "symptom", "label": "Sleep disturbance", "domain": "sleep", "ontology": { "hpo": "HP:0002360", "snomed": "301345002", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "sleep disorders", "insomnia", "unrefreshing sleep" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "sym:depression", "kind": "symptom", "label": "Depression / depressed mood", "domain": "psychiatric", "ontology": { "hpo": "HP:0000716", "snomed": "35489007", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "depression", "depressed mood", "low mood" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "sym:headache", "kind": "symptom", "label": "Headache", "domain": "other", "ontology": { "hpo": "HP:0002315", "snomed": "25064002", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "headache", "headaches" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "sym:dyspnea", "kind": "symptom", "label": "Dyspnoea", "domain": "respiratory", "ontology": { "hpo": "HP:0002094", "snomed": "267036007", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "dyspnea", "breathlessness", "shortness of breath" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "sym:anosmia-dysgeusia", "kind": "symptom", "label": "Loss of smell/taste", "domain": "sensory", "ontology": { "hpo": "HP:0000458", "snomed": "44169009", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "loss of taste and/or smell", "anosmia", "ageusia", "dysgeusia" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "sym:myalgia", "kind": "symptom", "label": "Myalgia", "domain": "musculoskeletal", "ontology": { "hpo": "HP:0003326", "snomed": "68962001", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "myalgia", "muscle pain" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "sym:muscle-weakness", "kind": "symptom", "label": "Muscle weakness", "domain": "musculoskeletal", "ontology": { "hpo": "HP:0001324", "snomed": "26544005", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "muscle weakness", "weakness" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "sym:arthralgia", "kind": "symptom", "label": "Arthralgia / rheumatic musculoskeletal pain", "domain": "musculoskeletal", "ontology": { "hpo": "HP:0002829", "snomed": "57676002", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "arthralgia", "joint pain", "rheumatic musculoskeletal pain", "long-lasting rheumatic musculoskeletal pain", "polyarthralgia" ], "boundary_note": "Reported symptom, not radiographic arthritis.", "unit": null, "unit_ucum": null }, { "id": "sym:irritable-bowel-syndrome", "kind": "symptom", "label": "Irritable bowel syndrome (post-infectious)", "domain": "gastrointestinal", "ontology": { "hpo": null, "snomed": "197130004", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "irritable bowel syndrome", "IBS", "post-infectious IBS" ], "boundary_note": "Rome-criteria IBS as a GI symptom-cluster outcome.", "unit": null, "unit_ucum": null }, { "id": "case-def:cfs", "kind": "case_definition", "label": "Chronic fatigue syndrome / ME-CFS caseness", "domain": "fatigue_pem", "ontology": { "hpo": null, "snomed": "52702003", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "chronic fatigue syndrome", "met CFS criteria", "ME/CFS caseness" ], "boundary_note": "Meeting a formal CFS case definition (Fukuda/CDC etc.), a symptom-cluster outcome distinct from the single symptom sym:fatigue.", "unit": null, "unit_ucum": null }, { "id": "case-def:cfs-like", "kind": "case_definition", "label": "CFS-like illness", "domain": "fatigue_pem", "ontology": { "hpo": null, "snomed": "52702003", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "chronic fatigue syndrome-like illness", "CFS-like illness" ], "boundary_note": "Author-defined CFS-like caseness that does not claim a formal case definition.", "unit": null, "unit_ucum": null }, { "id": "func:recovery", "kind": "functional", "label": "Felt fully recovered", "domain": "constitutional", "ontology": { "hpo": null, "snomed": null, "loinc": null }, "default_value_type": "proportion", "synonyms": [ "felt fully recovered", "full recovery" ], "boundary_note": "Self-reported global recovery.", "unit": null, "unit_ucum": null }, { "id": "func:qol-impairment", "kind": "functional", "label": "Impaired quality of life", "domain": "constitutional", "ontology": { "hpo": null, "snomed": null, "loinc": null }, "default_value_type": "proportion", "synonyms": [ "impaired quality of life", "severely affected quality of life", "functionally-impairing symptoms" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "func:unable-to-work", "kind": "functional", "label": "Not working due to illness", "domain": "constitutional", "ontology": { "hpo": null, "snomed": null, "loinc": null }, "default_value_type": "proportion", "synonyms": [ "not working due to illness", "unable to work" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "func:any-persistent-symptom", "kind": "functional", "label": "Any persistent symptom", "domain": "constitutional", "ontology": { "hpo": null, "snomed": null, "loinc": null }, "default_value_type": "proportion", "synonyms": [ "any persistent symptom", "persistent symptoms" ], "boundary_note": "A composite 'one or more symptoms' outcome; not a specific symptom and not comparable to single-symptom prevalences.", "unit": null, "unit_ucum": null }, { "id": "event:narcolepsy", "kind": "event", "label": "Narcolepsy (incident)", "domain": "sleep", "ontology": { "hpo": "HP:0030050", "snomed": "60380001", "loinc": null }, "default_value_type": "rate", "synonyms": [ "narcolepsy", "incident narcolepsy" ], "boundary_note": "Incident diagnosed narcolepsy, typically an incidence rate.", "unit": null, "unit_ucum": null }, { "id": "event:guillain-barre-syndrome", "kind": "event", "label": "Guillain-Barré syndrome", "domain": "neuropathic", "ontology": { "hpo": "HP:0007113", "snomed": "40956001", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "Guillain-Barré syndrome", "GBS" ], "boundary_note": "Acute post-infectious immune neuropathy.", "unit": null, "unit_ucum": null }, { "id": "physio:skeletal-muscle-pathology", "kind": "physiologic", "label": "Skeletal muscle pathology (biopsy)", "domain": "musculoskeletal", "ontology": { "hpo": null, "snomed": null, "loinc": null }, "default_value_type": "qualitative", "synonyms": [ "exercise-induced myopathy", "muscle amyloid deposits", "muscle fibre atrophy/necrosis" ], "boundary_note": "Tissue-level muscle findings from biopsy; typically qualitative or paired_change (pre/post exertion), not a prevalence.", "unit": null, "unit_ucum": null }, { "id": "sym:exercise-intolerance", "kind": "symptom", "label": "Exercise intolerance", "domain": "fatigue_pem", "ontology": { "hpo": "HP:0003546", "snomed": "27641005", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "exercise intolerance", "reduced exercise capacity" ], "boundary_note": "Reduced tolerance of exertion; related to but not identical with sym:post-exertional-malaise (which is delayed symptom worsening).", "unit": null, "unit_ucum": null }, { "id": "sym:paresthesia", "kind": "symptom", "label": "Paraesthesia / numbness", "domain": "neuropathic", "ontology": { "hpo": "HP:0003401", "snomed": "91019004", "loinc": null }, "default_value_type": "proportion", "synonyms": [ "tingling", "numbness", "paresthesia", "pins and needles", "numbness sensations" ], "boundary_note": null, "unit": null, "unit_ucum": null }, { "id": "lab:il-6", "kind": "lab", "label": "Interleukin-6 (elevated)", "domain": "other", "ontology": { "hpo": null, "snomed": null, "loinc": "26881-3" }, "default_value_type": "proportion", "synonyms": [ "IL-6", "interleukin 6" ], "boundary_note": "Stored here as the proportion of the cohort with an elevated value; the raw distribution would be a mean_sd observation.", "unit": "pg/mL", "unit_ucum": "pg/mL" }, { "id": "lab:il-8", "kind": "lab", "label": "Interleukin-8 (elevated)", "domain": "other", "ontology": { "hpo": null, "snomed": null, "loinc": "27141-1" }, "default_value_type": "proportion", "synonyms": [ "IL-8", "interleukin 8", "CXCL8" ], "boundary_note": null, "unit": "pg/mL", "unit_ucum": "pg/mL" }, { "id": "lab:ft3-low", "kind": "lab", "label": "Free tri-iodothyronine (low)", "domain": "other", "ontology": { "hpo": null, "snomed": null, "loinc": "3051-0" }, "default_value_type": "proportion", "synonyms": [ "free T3", "fT3", "free tri-iodothyronine" ], "boundary_note": "Proportion with a low fT3.", "unit": "pmol/L", "unit_ucum": "pmol/L" }, { "id": "lab:snfl", "kind": "lab", "label": "Serum neurofilament light chain (elevated)", "domain": "neurocognitive", "ontology": { "hpo": null, "snomed": null, "loinc": null }, "default_value_type": "proportion", "synonyms": [ "sNfL", "neurofilament light chain", "serum neurofilament" ], "boundary_note": "Marker of axonal injury; stored as proportion above a percentile threshold.", "unit": "pg/mL", "unit_ucum": "pg/mL" } ], "cohorts": [ { "schema_version": "2.0.0", "id": "appelman-2024-lc-muscle", "name": "Amsterdam Long COVID muscle-biopsy PEM cohort (Appelman)", "aliases": [ "Amsterdam UMC long COVID exercise/biopsy study" ], "outbreak_event": "COVID-19 pandemic", "pathogen_id": "sars-cov-2", "pathogen_class": "virus", "exposure_ascertainment": "mixed", "design": "case_control", "denominator_defined": "no", "denominator_method": null, "recruitment_source": "outpatient_clinic", "time_zero_definition": "Established long COVID with exertion-triggered post-exertional malaise; assessed before and after an exercise challenge", "time_zero_precision": "undefined", "control_group": "healthy_convenience", "control_matching_variables": [ "age", "sex" ], "n_source_population": null, "n_enrolled": 46, "n_analysed": 46, "followups": [], "max_followup_months": null, "instruments": [], "case_definition": "author_defined", "pem_assessed": "yes_validated_instrument", "objective_measures": [ "cpet_two_day", "muscle_biopsy", "lab_panel" ], "specimens_collected": true, "specimen_types": [ "muscle_tissue", "whole_blood", "serum" ], "acute_phase_specimens": "no", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "collaboration_only", "contact": null, "registration_id": "NCT05225688", "funders": [ "Amsterdam UMC", "Stichting Long COVID" ], "conflicts": null, "data_availability": null, "notes": "Small longitudinal case-control study (25 long COVID patients with PEM vs 21 healthy controls) and the only cohort in this database with tissue-level objective measures: a two-day cardiopulmonary exercise test to induce post-exertional malaise, with skeletal muscle biopsies before and after. It documented exercise-induced myopathy, metabolic disturbance, and amyloid-containing deposits that worsened after PEM. Included for the objective-measures and PEM-assessment gap matrices rather than for symptom prevalence; not denominator-defined for prevalence estimation.", "symptom_inventory_scope": "single_domain", "n_symptoms_queried": null, "symptom_instrument_note": "Selected specifically for post-exertional malaise; not a general symptom-prevalence survey.", "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "publications": [ { "id": "appelman-2024", "title": "Muscle abnormalities worsen after post-exertional malaise in long COVID", "authors": "Appelman B, Charlton BT, Goulding RP, et al.", "year": 2024, "journal": "Nature Communications", "doi": "10.1038/s41467-023-44432-3", "pmid": "38177128", "url": "https://pubmed.ncbi.nlm.nih.gov/38177128/", "open_access": true, "is_primary_cohort_paper": true } ], "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "appelman-myopathy-postpem", "cohort_id": "appelman-2024-lc-muscle", "publication_id": "appelman-2024", "schema_version": "2.0.0", "measure_id": "physio:skeletal-muscle-pathology", "measure_verbatim": "exercise-induced myopathy, metabolic disturbance and amyloid-containing deposits in skeletal muscle, worsening after post-exertional malaise", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 25 }, "timing": { "timepoint_months": null, "timepoint_band": "unspecified", "reference_period": "not_applicable", "is_cumulative": false }, "method": { "ascertainment": "physiologic_test", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "qualitative", "text": "Muscle biopsies after a two-day CPET-induced post-exertional malaise showed severe exercise-induced myopathy (atrophic fibres, focal necrosis), local and systemic metabolic disturbance, and amyloid-containing deposits; abnormalities were worse post-PEM than at baseline. No prevalence is reported — this is a mechanistic tissue finding.", "n_supporting": 25 }, "comparator": { "group": "healthy_convenience", "value": { "status": "measured_not_reported" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Abstract / Results (muscle biopsy pre/post exercise)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "blomberg-2021-bergen-covid", "name": "Bergen COVID-19 home-isolated cohort (Blomberg)", "aliases": [ "Bergen COVID-19 Research Cohort" ], "outbreak_event": "COVID-19 pandemic (Bergen, Norway, first wave 2020)", "pathogen_id": "sars-cov-2", "pathogen_class": "virus", "exposure_ascertainment": "pcr", "design": "prospective_inception", "denominator_defined": "yes", "denominator_method": "82% of all laboratory-confirmed COVID-19 cases in Bergen during the first pandemic wave, enrolled near acute infection; comprises 247 home-isolated and 65 hospitalised patients.", "recruitment_source": "community", "time_zero_definition": "Acute PCR-confirmed SARS-CoV-2 infection", "time_zero_precision": "month", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 312, "n_analysed": 312, "followups": [ { "months": 6, "n_assessed": 312, "n_lost": null } ], "max_followup_months": 6, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "active", "consent_future_use": "unknown", "external_access": "collaboration_only", "contact": null, "registration_id": null, "funders": [ "Helse Vest (Western Norway Regional Health Authority)", "Ministry of Health and Care Services, Norway" ], "conflicts": null, "data_availability": null, "notes": "Notable because it captured a near-complete community denominator (82% of local cases) and included predominantly mild, home-isolated patients, showing that persistent symptoms at 6 months affect even young adults with mild acute disease. No unexposed comparator.", "publications": [ { "id": "blomberg-2021", "title": "Long COVID in a prospective cohort of home-isolated patients", "authors": "Blomberg B, Mohn KG, Brokstad KA, et al.", "year": 2021, "journal": "Nature Medicine", "doi": "10.1038/s41591-021-01433-3", "pmid": "34163090", "url": "https://pubmed.ncbi.nlm.nih.gov/34163090/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "blomberg-persist-6mo", "cohort_id": "blomberg-2021-bergen-covid", "publication_id": "blomberg-2021", "schema_version": "2.0.0", "measure_id": "func:any-persistent-symptom", "measure_verbatim": "any persistent symptom at 6 months (whole cohort)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 312 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 189, "denominator": 312, "percent": 61, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (61%, 189 of 312, persistent symptoms at 6 months)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "blomberg-young-6mo", "cohort_id": "blomberg-2021-bergen-covid", "publication_id": "blomberg-2021", "schema_version": "2.0.0", "measure_id": "func:any-persistent-symptom", "measure_verbatim": "persistent symptoms at 6 months among home-isolated young adults aged 16-30", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 61 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 32, "denominator": 61, "percent": 52, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (52%, 32 of 61, young home-isolated adults)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "blomberg-fatigue-young-6mo", "cohort_id": "blomberg-2021-bergen-covid", "publication_id": "blomberg-2021", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "fatigue", "population": { "scope": "subgroup", "stratum": null, "denominator_basis": "symptomatic_subset", "n_assessed": 61 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 13, "denominator": 61, "percent": 21, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (home-isolated adults 16-30: fatigue 21%, 13 of 61)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "blomberg-anosmia-young-6mo", "cohort_id": "blomberg-2021-bergen-covid", "publication_id": "blomberg-2021", "schema_version": "2.0.0", "measure_id": "sym:anosmia-dysgeusia", "measure_verbatim": "loss of taste and/or smell", "population": { "scope": "subgroup", "stratum": null, "denominator_basis": "symptomatic_subset", "n_assessed": 61 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 17, "denominator": 61, "percent": 28, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (home-isolated adults 16-30: loss of taste/smell 28%, 17 of 61)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "blomberg-dyspnea-young-6mo", "cohort_id": "blomberg-2021-bergen-covid", "publication_id": "blomberg-2021", "schema_version": "2.0.0", "measure_id": "sym:dyspnea", "measure_verbatim": "dyspnea", "population": { "scope": "subgroup", "stratum": null, "denominator_basis": "symptomatic_subset", "n_assessed": 61 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 8, "denominator": 61, "percent": 13, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (home-isolated adults 16-30: dyspnea 13%, 8 of 61)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "blomberg-cognitive-young-6mo", "cohort_id": "blomberg-2021-bergen-covid", "publication_id": "blomberg-2021", "schema_version": "2.0.0", "measure_id": "sym:cognitive-dysfunction", "measure_verbatim": "impaired concentration", "population": { "scope": "subgroup", "stratum": null, "denominator_basis": "symptomatic_subset", "n_assessed": 61 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 8, "denominator": 61, "percent": 13, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (home-isolated adults 16-30: impaired concentration 13%, 8 of 61)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "blomberg-memory-young-6mo", "cohort_id": "blomberg-2021-bergen-covid", "publication_id": "blomberg-2021", "schema_version": "2.0.0", "measure_id": "sym:memory-impairment", "measure_verbatim": "memory problems", "population": { "scope": "subgroup", "stratum": null, "denominator_basis": "symptomatic_subset", "n_assessed": 61 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 7, "denominator": 61, "percent": 11, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (home-isolated adults 16-30: memory problems 11%, 7 of 61)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "bergen-giardiasis-2004", "name": "Bergen Giardiasis Cohort", "aliases": [ "Bergen Giardia outbreak cohort" ], "outbreak_event": "Bergen giardiasis outbreak 2004 (Norway)", "pathogen_id": "giardia-duodenalis", "pathogen_class": "protozoan", "exposure_ascertainment": "mixed", "design": "retrospective_cohort", "denominator_defined": "yes", "denominator_method": "Individuals with laboratory-confirmed Giardia during the 2004 Bergen waterborne outbreak, compared with matched controls from the same population.", "recruitment_source": "population_registry", "time_zero_definition": "Laboratory-confirmed acute giardiasis during the 2004 outbreak", "time_zero_precision": "quarter", "control_group": "unexposed_matched", "control_matching_variables": [ "age", "sex" ], "n_source_population": null, "n_enrolled": 1252, "n_analysed": 1252, "followups": [ { "months": 36, "n_assessed": null, "n_lost": null }, { "months": 72, "n_assessed": null, "n_lost": null }, { "months": 120, "n_assessed": null, "n_lost": null } ], "max_followup_months": 120, "instruments": [ "chalder-fatigue-scale", "rome-criteria-ibs" ], "case_definition": "chalder_threshold", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "no", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "Haukeland University Hospital / University of Bergen" ], "conflicts": null, "data_availability": null, "notes": "Controlled cohort with a matched unexposed comparator and unusually long follow-up (3, 6, and 10 years), demonstrating persistence of post-infectious IBS and chronic fatigue after a protozoan (non-viral) infection.", "publications": [ { "id": "hanevik-2014", "title": "Irritable bowel syndrome and chronic fatigue 6 years after giardia infection: a controlled prospective cohort study", "authors": "Hanevik K, Wensaas KA, Rortveit G, et al.", "year": 2014, "journal": "Clinical Infectious Diseases", "doi": "10.1093/cid/ciu629", "pmid": "25115874", "url": "https://pubmed.ncbi.nlm.nih.gov/25115874/", "open_access": false, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "bergen-ibs-6yr", "cohort_id": "bergen-giardiasis-2004", "publication_id": "hanevik-2014", "schema_version": "2.0.0", "measure_id": "sym:irritable-bowel-syndrome", "measure_verbatim": "irritable bowel syndrome 6 years after giardiasis", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 72, "timepoint_band": "24mo+", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "rome-criteria-ibs", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 39.4, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (IBS 39.4% in exposed, significantly elevated vs controls)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "bergen-cf-6yr", "cohort_id": "bergen-giardiasis-2004", "publication_id": "hanevik-2014", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "chronic fatigue 6 years after giardiasis", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 72, "timepoint_band": "24mo+", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "chalder-fatigue-scale", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 30.8, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (chronic fatigue 30.8% in exposed, significantly elevated vs controls)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "mylonas-rrv-polyarthritis", "name": "Brisbane Ross River Virus Polyarthritis Cohort (Mylonas)", "aliases": [ "Ross River virus natural history cohort" ], "outbreak_event": null, "pathogen_id": "ross-river-virus", "pathogen_class": "virus", "exposure_ascertainment": "serology", "design": "prospective_inception", "denominator_defined": "partial", "denominator_method": "Patients diagnosed with Ross River virus disease by general practitioners (clinical symptoms plus paired serology) in greater Brisbane, followed prospectively.", "recruitment_source": "outpatient_clinic", "time_zero_definition": "Diagnosis of acute Ross River virus disease", "time_zero_precision": "week", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": null, "n_analysed": null, "followups": [ { "months": 1, "n_assessed": null, "n_lost": null }, { "months": 2, "n_assessed": null, "n_lost": null }, { "months": 3, "n_assessed": null, "n_lost": null }, { "months": 6, "n_assessed": null, "n_lost": null }, { "months": 12, "n_assessed": null, "n_lost": null } ], "max_followup_months": 12, "instruments": [ "sf-36", "somatic-symptom-self-report" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [], "conflicts": null, "data_availability": null, "notes": "Prospective questionnaire-based natural-history study following joint symptoms and quality of life to 12 months; showed progressive resolution over 3–6 months in most patients. Enrolled sample size not captured here (pending human extraction from the primary paper).", "publications": [ { "id": "mylonas-2002", "title": "Natural history of Ross River virus-induced epidemic polyarthritis", "authors": "Mylonas AD, Brown AM, Carthew TL, et al.", "year": 2002, "journal": "Medical Journal of Australia", "pmid": "12358577", "url": "https://pubmed.ncbi.nlm.nih.gov/12358577/", "open_access": false, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [] }, { "schema_version": "2.0.0", "id": "katz-2009-mononucleosis", "name": "Chicago adolescent post-mononucleosis cohort (Katz)", "aliases": [ "Northwestern adolescent IM/CFS cohort" ], "outbreak_event": null, "pathogen_id": "epstein-barr-virus", "pathogen_class": "virus", "exposure_ascertainment": "serology", "design": "prospective_inception", "denominator_defined": "yes", "denominator_method": "Consecutive adolescents (12-18 y) with serologically confirmed acute infectious mononucleosis, enrolled at diagnosis and followed prospectively.", "recruitment_source": "community", "time_zero_definition": "Serologically confirmed acute infectious mononucleosis", "time_zero_precision": "month", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 301, "n_analysed": 301, "followups": [ { "months": 6, "n_assessed": 301, "n_lost": null }, { "months": 12, "n_assessed": null, "n_lost": null }, { "months": 24, "n_assessed": null, "n_lost": null } ], "max_followup_months": 24, "instruments": [], "case_definition": "fukuda_1994", "pem_assessed": "unclear", "objective_measures": [ "none" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "National Institutes of Health (NIAID)" ], "conflicts": null, "data_availability": null, "notes": "Strong prospective inception cohort in adolescents with laboratory-confirmed acute EBV mononucleosis and structured re-screening for CFS caseness at fixed timepoints. Shows a declining post-infective CFS rate over two years (13% -> 7% -> 4%), one of the cleanest demonstrations of resolving post-viral fatigue.", "publications": [ { "id": "katz-2009", "title": "Chronic fatigue syndrome after infectious mononucleosis in adolescents", "authors": "Katz BZ, Shiraishi Y, Mears CJ, Binns HJ, Taylor R.", "year": 2009, "journal": "Pediatrics", "doi": "10.1542/peds.2008-1879", "pmid": "19564299", "url": "https://pubmed.ncbi.nlm.nih.gov/19564299/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "single_domain", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "katz-cfs-6mo", "cohort_id": "katz-2009-mononucleosis", "publication_id": "katz-2009", "schema_version": "2.0.0", "measure_id": "case-def:cfs", "measure_verbatim": "met criteria for chronic fatigue syndrome 6 months after infectious mononucleosis", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 301 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 39, "denominator": 301, "percent": 13, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (13% at 6 months)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "katz-cfs-12mo", "cohort_id": "katz-2009-mononucleosis", "publication_id": "katz-2009", "schema_version": "2.0.0", "measure_id": "case-def:cfs", "measure_verbatim": "met criteria for chronic fatigue syndrome 12 months after infectious mononucleosis", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 301 }, "timing": { "timepoint_months": 12, "timepoint_band": "6-12mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 301, "percent": 7, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (7% at 12 months)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "katz-cfs-24mo", "cohort_id": "katz-2009-mononucleosis", "publication_id": "katz-2009", "schema_version": "2.0.0", "measure_id": "case-def:cfs", "measure_verbatim": "met criteria for chronic fatigue syndrome 24 months after infectious mononucleosis", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 301 }, "timing": { "timepoint_months": 24, "timepoint_band": "12-24mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 301, "percent": 4, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (4% at 24 months)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "colombo-dengue", "name": "Colombo Dengue Study (CDS)", "aliases": [ "CDS" ], "outbreak_event": null, "pathogen_id": "dengue-virus", "pathogen_class": "virus", "exposure_ascertainment": "mixed", "design": "prospective_non_inception", "denominator_defined": "yes", "denominator_method": "Adults presenting with acute febrile illness (<3 days) clinically suspected as dengue; dengue confirmed vs non-dengue by laboratory testing.", "recruitment_source": "hospital", "time_zero_definition": "Onset of acute febrile illness", "time_zero_precision": "week", "control_group": "other_disease", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 260, "n_analysed": 260, "followups": [ { "months": 2, "n_assessed": 260, "n_lost": null } ], "max_followup_months": 2, "instruments": [ "chalder-fatigue-scale" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum", "plasma" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [], "conflicts": null, "data_availability": null, "notes": "Prospective cohort with a same-setting non-dengue febrile comparator, enabling a relative-risk estimate for post-infection fatigue. Short (2-month) follow-up captures early convalescence only.", "publications": [ { "id": "sigera-2021", "title": "Dengue and post-infection fatigue: findings from a prospective cohort—the Colombo Dengue Study", "authors": "Sigera PC, Rajapakse S, Weeratunga P, et al.", "year": 2021, "journal": "Transactions of the Royal Society of Tropical Medicine and Hygiene", "doi": "10.1093/trstmh/traa110", "pmid": "33099653", "url": "https://pubmed.ncbi.nlm.nih.gov/33099653/", "open_access": false, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "single_domain", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "cds-fatigue-2mo", "cohort_id": "colombo-dengue", "publication_id": "sigera-2021", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "fatigue at 2 months post-infection", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 158 }, "timing": { "timepoint_months": 2, "timepoint_band": "0-3mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "chalder-fatigue-scale", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 51, "denominator": 158, "percent": 32, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (51/158 dengue patients; RR 4.93, 95% CI 2.3–10.4 vs non-dengue)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "dubbo-infection-outcomes", "name": "Dubbo Infection Outcomes Study (DIOS)", "aliases": [ "Dubbo study", "DIOS" ], "outbreak_event": null, "pathogen_id": "mixed-ebv-rrv-cburnetii", "pathogen_class": "mixed", "exposure_ascertainment": "serology", "design": "prospective_inception", "denominator_defined": "yes", "denominator_method": "Consecutive patients presenting to primary care with acute EBV, Ross River virus, or Q fever confirmed by serology, enrolled at acute infection.", "recruitment_source": "outpatient_clinic", "time_zero_definition": "Onset of acute, serologically confirmed infection", "time_zero_precision": "week", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 253, "n_analysed": 253, "followups": [ { "months": 6, "n_assessed": null, "n_lost": null }, { "months": 12, "n_assessed": null, "n_lost": null } ], "max_followup_months": 12, "instruments": [ "somatic-symptom-self-report", "sf-36" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum", "whole_blood" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "National Health and Medical Research Council (Australia)" ], "conflicts": null, "data_availability": null, "notes": "Landmark prospective inception cohort showing a stereotyped post-infective fatigue syndrome across three unrelated pathogens, with risk predicted by acute-illness severity rather than the specific microbe. Compared across pathogens; no unexposed control group.", "publications": [ { "id": "hickie-2006", "title": "Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study", "authors": "Hickie I, Davenport T, Wakefield D, et al.", "year": 2006, "journal": "BMJ", "doi": "10.1136/bmj.38933.585764.AE", "pmid": "16950834", "url": "https://pubmed.ncbi.nlm.nih.gov/16950834/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "dubbo-cfs-6mo", "cohort_id": "dubbo-infection-outcomes", "publication_id": "hickie-2006", "schema_version": "2.0.0", "measure_id": "case-def:cfs", "measure_verbatim": "met diagnostic criteria for a chronic fatigue syndrome at 6 months", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 253 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 253, "percent": 11, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (approx. 11% met CFS criteria at 6 months)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "nohynek-2012-pandemrix-narcolepsy", "name": "Finland Pandemrix childhood narcolepsy cohort (Nohynek)", "aliases": [ "Finnish AS03/H1N1 vaccine narcolepsy cohort" ], "outbreak_event": "2009 H1N1 pandemic vaccination campaign (Finland)", "pathogen_id": "pandemrix-as03-h1n1", "pathogen_class": "vaccine", "exposure_ascertainment": "registry_code", "design": "registry_linkage", "denominator_defined": "yes", "denominator_method": "All children living in Finland born 1 Jan 1991 - 31 Dec 2005, with vaccination status from the national vaccination registry and narcolepsy cases from national health registries.", "recruitment_source": "population_registry", "time_zero_definition": "Receipt (or non-receipt) of AS03-adjuvanted Pandemrix H1N1 vaccine during the 2009-10 campaign", "time_zero_precision": "month", "control_group": "unexposed_unmatched", "control_matching_variables": [], "n_source_population": null, "n_enrolled": null, "n_analysed": 67, "followups": [], "max_followup_months": null, "instruments": [], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "polysomnography" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "not_applicable", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "not_applicable", "external_access": "not_applicable", "contact": null, "registration_id": null, "funders": [ "National Institute for Health and Welfare (THL), Finland" ], "conflicts": null, "data_availability": null, "notes": "Population registry-linkage cohort covering all Finnish children in the birth range, comparing narcolepsy incidence between Pandemrix-vaccinated and unvaccinated children (vaccine coverage 75%). Included to span the vaccine trigger class: the strongest example of an immune-mediated (autoimmune) post-exposure sequela with a defined denominator and an unvaccinated comparator. Of 67 confirmed cases, 46 vaccinated and 7 unvaccinated entered the primary analysis.", "publications": [ { "id": "nohynek-2012", "title": "AS03 adjuvanted AH1N1 vaccine associated with an abrupt increase in the incidence of childhood narcolepsy in Finland", "authors": "Nohynek H, Jokinen J, Partinen M, et al.", "year": 2012, "journal": "PLoS ONE", "doi": "10.1371/journal.pone.0033536", "pmid": "22470453", "url": "https://pubmed.ncbi.nlm.nih.gov/22470453/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "none", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "narcolepsy-rate-ratio", "cohort_id": "nohynek-2012-pandemrix-narcolepsy", "publication_id": "nohynek-2012", "schema_version": "2.0.0", "measure_id": "event:narcolepsy", "measure_verbatim": "narcolepsy incidence 9.0 per 100 000 person-years in vaccinated vs 0.7 in unvaccinated children (rate ratio 12.7)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "person_time", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": null, "timepoint_band": "unspecified", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "rate", "events": 46, "person_time": { "status": "measured_not_reported" }, "person_time_unit": "per 100000 person-years", "rate": 9.0, "ci": null }, "comparator": { "group": "unexposed_unmatched", "value": { "type": "rate", "rate": 0.7, "person_time_unit": "per 100000 person-years" }, "effect": { "estimate": 12.7, "effect_type": "rr", "ci": [ 6.1, 30.8 ] } }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (rate ratio 12.7, 95% CI 6.1-30.8)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "cao-lormeau-zika-gbs", "name": "French Polynesia Zika–Guillain-Barré case-control study", "aliases": [ "Cao-Lormeau Zika GBS study" ], "outbreak_event": "French Polynesia Zika outbreak 2013-14", "pathogen_id": "zika-virus", "pathogen_class": "virus", "exposure_ascertainment": "mixed", "design": "case_control", "denominator_defined": "no", "denominator_method": null, "recruitment_source": "hospital", "time_zero_definition": "Onset of Guillain-Barré syndrome (cases); preceding transient illness compatible with Zika ~6 days earlier", "time_zero_precision": "week", "control_group": "other_disease", "control_matching_variables": [ "age", "sex", "island of residence" ], "n_source_population": null, "n_enrolled": 42, "n_analysed": 42, "followups": [], "max_followup_months": null, "instruments": [ "brighton-gbs-criteria" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "Labex IBEID", "European Union" ], "conflicts": null, "data_availability": null, "notes": "Case-control design (42 GBS cases; two control groups of 98 age/sex/island-matched patients and 70 Zika-positive patients without neurological signs). Establishes the causal link between Zika infection and an acute post-infectious immune sequela (GBS) rather than a chronic fatigue/pain syndrome; included to span the immune-neurological end of the PAIS spectrum. No longitudinal follow-up of chronic outcomes in this report.", "publications": [ { "id": "cao-lormeau-2016", "title": "Guillain-Barré Syndrome outbreak associated with Zika virus infection in French Polynesia: a case-control study", "authors": "Cao-Lormeau VM, Blake A, Mons S, et al.", "year": 2016, "journal": "The Lancet", "doi": "10.1016/S0140-6736(16)00562-6", "pmid": "26948433", "url": "https://pubmed.ncbi.nlm.nih.gov/26948433/", "open_access": false, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "single_domain", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "zika-gbs-serology", "cohort_id": "cao-lormeau-zika-gbs", "publication_id": "cao-lormeau-2016", "schema_version": "2.0.0", "measure_id": "event:guillain-barre-syndrome", "measure_verbatim": "Guillain-Barré syndrome patients with serological evidence of recent Zika virus infection (anti-ZIKV IgM or IgG)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 42 }, "timing": { "timepoint_months": 0, "timepoint_band": "acute", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "brighton-gbs-criteria", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 41, "denominator": 42, "percent": 98, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (41/42 GBS cases had anti-ZIKV IgM or IgG)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "lam-2009-sars-survivors", "name": "Hong Kong SARS survivors 4-year follow-up (Lam)", "aliases": [ "SARS survivors long-term follow-up" ], "outbreak_event": "SARS outbreak 2003 (Hong Kong)", "pathogen_id": "sars-cov-1", "pathogen_class": "virus", "exposure_ascertainment": "clinical_diagnosis", "design": "cross_sectional", "denominator_defined": "partial", "denominator_method": "Survivors of laboratory/clinically diagnosed SARS from the 2003 Hong Kong outbreak, assessed at a single 4-year follow-up.", "recruitment_source": "hospital", "time_zero_definition": "Acute SARS illness in 2003", "time_zero_precision": "year", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 233, "n_analysed": 181, "followups": [ { "months": 48, "n_assessed": 181, "n_lost": null } ], "max_followup_months": 48, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "no", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "not_applicable", "external_access": "not_applicable", "contact": null, "registration_id": null, "funders": [ "not reported" ], "conflicts": null, "data_availability": null, "notes": "Cross-sectional 4-year follow-up of the 2003 SARS-CoV-1 survivors, showing high rates of chronic fatigue and a subset meeting CFS criteria years after the acute illness. A single-timepoint survivor survey with no acute-phase or unexposed comparison, but historically important as a coronavirus antecedent to Long COVID.", "publications": [ { "id": "lam-2009", "title": "Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up", "authors": "Lam MH, Wing YK, Yu MW, et al.", "year": 2009, "journal": "Archives of Internal Medicine", "doi": "10.1001/archinternmed.2009.384", "pmid": "20008700", "url": "https://pubmed.ncbi.nlm.nih.gov/20008700/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "lam-chronic-fatigue-4yr", "cohort_id": "lam-2009-sars-survivors", "publication_id": "lam-2009", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "chronic fatigue at ~4 years after SARS", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 181 }, "timing": { "timepoint_months": 48, "timepoint_band": "24mo+", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 181, "percent": 40.3, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (40.3% chronic fatigue)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "lam-cfs-4yr", "cohort_id": "lam-2009-sars-survivors", "publication_id": "lam-2009", "schema_version": "2.0.0", "measure_id": "case-def:cfs", "measure_verbatim": "met modified CDC criteria for chronic fatigue syndrome at ~4 years after SARS", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 181 }, "timing": { "timepoint_months": 48, "timepoint_band": "24mo+", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 181, "percent": 27.1, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (27.1% met CFS criteria)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "huang-2021-wuhan", "name": "Jinyintan (Wuhan) COVID-19 discharge cohort (Huang)", "aliases": [ "Wuhan 6-month/2-year COVID cohort" ], "outbreak_event": "COVID-19 pandemic (Wuhan first wave, early 2020)", "pathogen_id": "sars-cov-2", "pathogen_class": "virus", "exposure_ascertainment": "pcr", "design": "prospective_non_inception", "denominator_defined": "yes", "denominator_method": "Consecutive adults with laboratory-confirmed COVID-19 discharged from Jin Yin-tan Hospital, Wuhan, between 7 Jan and 29 May 2020.", "recruitment_source": "hospital", "time_zero_definition": "Symptom onset of acute COVID-19 (assessed at 6 months, 1 year, and 2 years)", "time_zero_precision": "month", "control_group": "unexposed_matched", "control_matching_variables": [ "age", "sex", "comorbidity" ], "n_source_population": null, "n_enrolled": 1733, "n_analysed": 1733, "followups": [ { "months": 6, "n_assessed": 1733, "n_lost": null }, { "months": 12, "n_assessed": 1276, "n_lost": null }, { "months": 24, "n_assessed": 1192, "n_lost": null } ], "max_followup_months": 24, "instruments": [ "sf-36" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "imaging", "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "unclear", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "Chinese Academy of Medical Sciences", "National Natural Science Foundation of China" ], "conflicts": null, "data_availability": null, "notes": "Large prospective survivor cohort with matched community controls at later timepoints. Integrity caveat: the 6-month paper received a Lancet Expression of Concern (2022) and was retracted and republished (2023) after some variables were found to have been disordered; the principal conclusions were upheld in the republished version and in the 1- and 2-year follow-ups. Retained here with this replication note precisely because the database records integrity status rather than hiding it.", "publications": [ { "id": "huang-2021", "title": "6-month consequences of COVID-19 in patients discharged from hospital: a cohort study", "authors": "Huang C, Huang L, Wang Y, et al.", "year": 2021, "journal": "The Lancet", "doi": "10.1016/S0140-6736(20)32656-8", "pmid": "33428867", "url": "https://pubmed.ncbi.nlm.nih.gov/33428867/", "open_access": true, "is_primary_cohort_paper": true }, { "id": "huang-2022-2yr", "title": "Health outcomes in people 2 years after surviving hospitalisation with COVID-19: a longitudinal cohort study", "authors": "Huang L, Li X, Gu X, et al.", "year": 2022, "journal": "The Lancet Respiratory Medicine", "doi": "10.1016/S2213-2600(22)00126-6", "pmid": "35568052", "url": "https://pubmed.ncbi.nlm.nih.gov/35568052/", "open_access": false, "is_primary_cohort_paper": false } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "huang-fatigue-6mo", "cohort_id": "huang-2021-wuhan", "publication_id": "huang-2021", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "fatigue or muscle weakness at 6 months after symptom onset", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 1655 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 1038, "denominator": 1655, "percent": 63, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (fatigue or muscle weakness 63%, 1038 of 1655)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "huang-fatigue-6mo-sf", "cohort_id": "huang-2021-wuhan", "publication_id": "huang-2021", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "fatigue or muscle weakness", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 1655 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 1038, "denominator": 1655, "percent": 63, "ci": null, "precision": "exact" }, "comparator": { "group": "unexposed_matched", "value": { "status": "measured_not_reported" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (fatigue or muscle weakness 63%, 1038 of 1655)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "aucott-slice-ptlds", "name": "Johns Hopkins SLICE early-Lyme cohort (Aucott/Rebman)", "aliases": [ "Study of Lyme Immunology and Clinical Events (SLICE)" ], "outbreak_event": null, "pathogen_id": "borrelia-burgdorferi", "pathogen_class": "bacterium", "exposure_ascertainment": "clinical_diagnosis", "design": "prospective_inception", "denominator_defined": "yes", "denominator_method": "Patients with physician-diagnosed early Lyme disease (erythema migrans), ideally treated, enrolled at diagnosis; a group of endemic-area participants without Lyme disease serves as the comparison.", "recruitment_source": "outpatient_clinic", "time_zero_definition": "Diagnosis and antibiotic treatment of early Lyme disease", "time_zero_precision": "week", "control_group": "healthy_convenience", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 234, "n_analysed": 234, "followups": [ { "months": 6, "n_assessed": null, "n_lost": null }, { "months": 12, "n_assessed": null, "n_lost": null } ], "max_followup_months": 12, "instruments": [ "sf-36" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum", "plasma", "pbmc" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "active", "consent_future_use": "disease_specific", "external_access": "collaboration_only", "contact": null, "registration_id": null, "funders": [ "National Institutes of Health (NIAID)", "Steven & Alexandra Cohen Foundation" ], "conflicts": null, "data_availability": null, "notes": "Prospective inception cohort of ideally-treated early Lyme disease with a non-Lyme comparison group and a bio-repository, designed specifically to estimate the incidence of post-treatment Lyme disease. Functionally-impairing persistent symptoms occurred in 14% of treated patients vs 4% of controls, giving a rigorous denominator for PTLD that most Lyme literature lacks.", "publications": [ { "id": "aucott-2022", "title": "Risk of post-treatment Lyme disease in patients with ideally-treated early Lyme disease: a prospective cohort study", "authors": "Aucott JN, Yang T, Yoon I, Powell D, Geller SA, Rebman AW.", "year": 2022, "journal": "International Journal of Infectious Diseases", "doi": "10.1016/j.ijid.2022.01.033", "url": "https://www.ijidonline.com/article/S1201-9712(22)00035-2/fulltext", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "aucott-ptld-1yr", "cohort_id": "aucott-slice-ptlds", "publication_id": "aucott-2022", "schema_version": "2.0.0", "measure_id": "func:qol-impairment", "measure_verbatim": "functionally-impairing persistent symptoms (post-treatment Lyme disease) after ideal treatment of early Lyme disease vs non-Lyme controls", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 234 }, "timing": { "timepoint_months": 12, "timepoint_band": "6-12mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "sf-36", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 234, "percent": 14, "ci": null, "precision": "approximate" }, "comparator": { "group": "healthy_convenience", "value": { "type": "proportion", "percent": 4, "precision": "exact", "denominator": 49 }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (14% of treated Lyme patients vs 4% of controls)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "white-1998-glandular-fever", "name": "London post-glandular-fever fatigue cohort (White)", "aliases": [ "St Bartholomew's glandular fever cohort" ], "outbreak_event": null, "pathogen_id": "epstein-barr-virus", "pathogen_class": "virus", "exposure_ascertainment": "serology", "design": "prospective_inception", "denominator_defined": "yes", "denominator_method": "Consecutive patients presenting with glandular fever (EBV) or an ordinary upper respiratory tract infection, enrolled at acute presentation and followed prospectively; the URTI group serves as the comparison.", "recruitment_source": "community", "time_zero_definition": "Acute glandular fever (or comparison upper respiratory tract infection)", "time_zero_precision": "month", "control_group": "other_disease", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 250, "n_analysed": 250, "followups": [ { "months": 2, "n_assessed": null, "n_lost": null }, { "months": 6, "n_assessed": null, "n_lost": null } ], "max_followup_months": 6, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "Wellcome Trust" ], "conflicts": null, "data_availability": null, "notes": "Landmark prospective inception cohort with an active comparison group (ordinary URTI), showing that an acute post-infective fatigue syndrome is markedly more common after glandular fever than after a routine URTI. A chronic fatigue syndrome persisted in a minority (~9-10%) at 6 months. Establishes specificity of the trigger, not just occurrence.", "publications": [ { "id": "white-1998", "title": "Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever", "authors": "White PD, Thomas JM, Amess J, Crawford DH, Grover SA, et al.", "year": 1998, "journal": "British Journal of Psychiatry", "doi": "10.1192/bjp.173.6.475", "pmid": "9926075", "url": "https://pubmed.ncbi.nlm.nih.gov/9926075/", "open_access": false, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "single_domain", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "white-acute-fatigue", "cohort_id": "white-1998-glandular-fever", "publication_id": "white-1998", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "acute fatigue syndrome at onset after glandular fever (47%) vs after ordinary upper respiratory tract infection (20%)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 0, "timepoint_band": "acute", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 47, "ci": null, "precision": "approximate" }, "comparator": { "group": "other_disease", "value": { "type": "proportion", "percent": 20, "precision": "exact" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (acute fatigue syndrome 47% GF vs 20% URTI)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "morroy-netherlands-qfever", "name": "Netherlands Q-fever outbreak cohort (Morroy)", "aliases": [ "Dutch Q-fever fatigue cohort" ], "outbreak_event": "Netherlands Q-fever outbreak 2007-2010", "pathogen_id": "coxiella-burnetii", "pathogen_class": "bacterium", "exposure_ascertainment": "serology", "design": "cross_sectional", "denominator_defined": "yes", "denominator_method": "Notified acute Q-fever patients from the 2007-2008 Dutch outbreaks, surveyed by postal questionnaire 12-26 months after illness onset; health status compared with Dutch reference norms.", "recruitment_source": "population_registry", "time_zero_definition": "Onset of notified acute Q-fever illness", "time_zero_precision": "month", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 870, "n_analysed": null, "followups": [ { "months": 18, "n_assessed": null, "n_lost": null } ], "max_followup_months": 26, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "no", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "not_applicable", "external_access": "not_applicable", "contact": null, "registration_id": null, "funders": [ "Netherlands National Institute for Public Health and the Environment (RIVM)" ], "conflicts": null, "data_availability": null, "notes": "Large registry-based survey following the world's largest documented Q-fever outbreak, measuring long-term fatigue and quality of life 1-2 years after acute illness with the Nijmegen Clinical Screening Instrument. A denominator-defined bacterial (non-viral) post-infectious fatigue cohort. Cross-sectional postal survey design; compared with population norms rather than a concurrent unexposed control.", "publications": [ { "id": "morroy-2011", "title": "The health status of Q-fever patients after long-term follow-up", "authors": "Morroy G, Peters JB, van Nieuwenhof M, et al.", "year": 2011, "journal": "BMC Infectious Diseases", "doi": "10.1186/1471-2334-11-97", "pmid": "21501483", "url": "https://pubmed.ncbi.nlm.nih.gov/21501483/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "qfever-fatigue-longterm", "cohort_id": "morroy-netherlands-qfever", "publication_id": "morroy-2011", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "severely affected by fatigue 12-26 months after acute Q-fever", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 18, "timepoint_band": "12-24mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 43.5, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (fatigue severely affected 43.5%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "qfever-qol-longterm", "cohort_id": "morroy-netherlands-qfever", "publication_id": "morroy-2011", "schema_version": "2.0.0", "measure_id": "func:qol-impairment", "measure_verbatim": "severely affected general quality of life 12-26 months after acute Q-fever", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 18, "timepoint_band": "12-24mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 44.9, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (general quality of life severely affected 44.9%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "harmonisation_ruleset": "pais-harmony-v1", "id": "marburg-pacvs", "name": "PACVS registry cohort (Semmler/Mundorf)", "aliases": [ "Post-Acute COVID-19 Vaccination Syndrome registry", "Marburg/Düsseldorf PACVS cohort" ], "outbreak_event": "COVID-19 vaccination campaign (2021-)", "pathogen_id": "covid-19-vaccine", "pathogen_class": "vaccine", "exposure_ascertainment": "clinical_diagnosis", "design": "cross_sectional", "denominator_defined": "no", "denominator_method": null, "recruitment_source": "self_referral", "time_zero_definition": "First SARS-CoV-2 (mRNA) vaccination; chronic symptoms persisting >=5 months", "time_zero_precision": "month", "control_group": "healthy_convenience", "control_matching_variables": [ "age", "sex" ], "n_source_population": null, "n_enrolled": 191, "n_analysed": 191, "followups": [ { "months": 6, "n_assessed": 191, "n_lost": null } ], "max_followup_months": 6, "instruments": [], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "no", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "not reported" ], "conflicts": null, "data_availability": null, "notes": "Comparative registry cohort of 191 people reporting post-acute COVID-19 vaccination syndrome (PACVS) vs 89 healthy controls, with serum biomarkers measured before and 6 months after vaccination. Distinguishes the vaccine trigger class (with Nohynek). Self-referred, not denominator-defined, so prevalence figures describe the affected registry, not a population; control-group values for individual markers were not extracted here and are marked measured_not_reported.", "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": "Symptom clustering plus serum biomarker panel (interleukins, thyroid hormones, IgG subclasses, iron markers, neurofilament light chain, receptor autoantibodies).", "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "publications": [ { "id": "mundorf-2024", "title": "Clinical and Diagnostic Features of Post-Acute COVID-19 Vaccination Syndrome (PACVS)", "authors": "Mundorf AK, Semmler A, Heidecke H, et al.", "year": 2024, "journal": "Vaccines (Basel)", "doi": "10.3390/vaccines12070790", "pmid": "39066428", "url": "https://pubmed.ncbi.nlm.nih.gov/39066428/", "open_access": true, "is_primary_cohort_paper": true }, { "id": "semmler-2023", "title": "Chronic Fatigue and Dysautonomia following COVID-19 Vaccination Is Distinguished from Normal Vaccination Response by Altered Blood Markers", "authors": "Semmler A, Mundorf AK, Kuechler AS, et al.", "year": 2023, "journal": "Vaccines (Basel)", "doi": "10.3390/vaccines11111642", "pmid": "38005974", "url": "https://pubmed.ncbi.nlm.nih.gov/38005974/", "open_access": true, "is_primary_cohort_paper": false } ], "observations": [ { "id": "marburg-fatigue", "cohort_id": "marburg-pacvs", "publication_id": "mundorf-2024", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "malaise and chronic fatigue present in >80% of cases", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 191 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 191, "percent": 80, "ci": null, "precision": "approximate" }, "comparator": { "group": "healthy_convenience", "value": { "status": "measured_not_reported" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Abstract (>80% malaise and chronic fatigue)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "marburg-il6", "cohort_id": "marburg-pacvs", "publication_id": "mundorf-2024", "schema_version": "2.0.0", "measure_id": "lab:il-6", "measure_verbatim": "elevated interleukin-6", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 191 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "lab_assay", "instrument_id": null, "severity_threshold": "above reference range", "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 191, "percent": 60, "ci": null, "precision": "approximate" }, "comparator": { "group": "healthy_convenience", "value": { "status": "measured_not_reported" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (elevated IL-6 in 60%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "marburg-il8", "cohort_id": "marburg-pacvs", "publication_id": "mundorf-2024", "schema_version": "2.0.0", "measure_id": "lab:il-8", "measure_verbatim": "elevated interleukin-8 (reported 83-90%)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 191 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "lab_assay", "instrument_id": null, "severity_threshold": "above reference range", "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 191, "percent": 83, "ci": null, "precision": "approximate" }, "comparator": { "group": "healthy_convenience", "value": { "status": "measured_not_reported" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (elevated IL-8, 83-90%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "marburg-ft3", "cohort_id": "marburg-pacvs", "publication_id": "mundorf-2024", "schema_version": "2.0.0", "measure_id": "lab:ft3-low", "measure_verbatim": "reduced free tri-iodine thyroxine (>80%)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 191 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "lab_assay", "instrument_id": null, "severity_threshold": "below reference range", "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 191, "percent": 80, "ci": null, "precision": "approximate" }, "comparator": { "group": "healthy_convenience", "value": { "status": "measured_not_reported" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (low fT3 in >80%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "marburg-snfl", "cohort_id": "marburg-pacvs", "publication_id": "mundorf-2024", "schema_version": "2.0.0", "measure_id": "lab:snfl", "measure_verbatim": "elevated soluble neurofilament light chains above the 90th percentile", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 191 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "lab_assay", "instrument_id": null, "severity_threshold": ">90th percentile", "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 191, "percent": 27, "ci": null, "precision": "exact" }, "comparator": { "group": "healthy_convenience", "value": { "status": "measured_not_reported" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (sNfL >90th percentile in 27%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "davis-2021-longcovid", "name": "Patient-Led Long COVID international cohort (Davis 2021)", "aliases": [ "Patient-Led Research Collaborative Long COVID survey" ], "outbreak_event": "COVID-19 pandemic (onset before June 2020)", "pathogen_id": "sars-cov-2", "pathogen_class": "virus", "exposure_ascertainment": "mixed", "design": "survey", "denominator_defined": "no", "denominator_method": null, "recruitment_source": "patient_organisation", "time_zero_definition": "Self-reported onset of suspected or confirmed COVID-19 (illness lasting >28 days, onset prior to June 2020)", "time_zero_precision": "week", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 3762, "n_analysed": 3762, "followups": [ { "months": 6, "n_assessed": null, "n_lost": null }, { "months": 7, "n_assessed": null, "n_lost": null } ], "max_followup_months": 7, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "none", "pem_assessed": "yes_single_item", "objective_measures": [ "none" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "no", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "none", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "Patient-Led Research Collaborative (self-funded)" ], "conflicts": "Authors were members of the patient-led group and many were themselves Long COVID patients.", "data_availability": "Aggregate data reported in supplement.", "notes": "Deliberately included as a methodologically weak but historically pivotal cohort: a large (n=3762, 56 countries) self-selected online convenience sample recruited through patient support communities, with no control group, no laboratory confirmation for most respondents, and self-reported outcomes. Its breadth of symptom characterisation (203 symptoms across 10 organ systems) is unmatched, but the design cannot estimate population prevalence. Useful in the gap matrix to contrast against denominator-defined cohorts.", "publications": [ { "id": "davis-2021", "title": "Characterizing long COVID in an international cohort: 7 months of symptoms and their impact", "authors": "Davis HE, Assaf GS, McCorkell L, et al.", "year": 2021, "journal": "EClinicalMedicine", "doi": "10.1016/j.eclinm.2021.101019", "pmid": "34308300", "url": "https://pubmed.ncbi.nlm.nih.gov/34308300/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "comprehensive_inventory", "n_symptoms_queried": 203, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "davis-fatigue-6mo", "cohort_id": "davis-2021-longcovid", "publication_id": "davis-2021", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "fatigue reported among respondents symptomatic after month 6", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 80.0, "ci": [ 78.5, 81.6 ], "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (most likely symptoms after month 6)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "davis-pem-6mo", "cohort_id": "davis-2021-longcovid", "publication_id": "davis-2021", "schema_version": "2.0.0", "measure_id": "sym:post-exertional-malaise", "measure_verbatim": "post-exertional malaise reported among respondents symptomatic after month 6", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 73.3, "ci": [ 71.5, 75.1 ], "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (most likely symptoms after month 6)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "davis-cognitive-6mo", "cohort_id": "davis-2021-longcovid", "publication_id": "davis-2021", "schema_version": "2.0.0", "measure_id": "sym:cognitive-dysfunction", "measure_verbatim": "cognitive dysfunction reported among respondents symptomatic after month 6", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 58.4, "ci": [ 56.5, 60.2 ], "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (most likely symptoms after month 6)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "davis-work-7mo", "cohort_id": "davis-2021-longcovid", "publication_id": "davis-2021", "schema_version": "2.0.0", "measure_id": "func:unable-to-work", "measure_verbatim": "not working at time of survey due to illness (a further 45.2% required a reduced work schedule)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 7, "timepoint_band": "6-12mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 22.3, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (employment impact)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "davis-fatigue-6mo-sf", "cohort_id": "davis-2021-longcovid", "publication_id": "davis-2021", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "fatigue", "population": { "scope": "subgroup", "stratum": null, "denominator_basis": "symptomatic_subset", "n_assessed": 3762 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 3762, "percent": 80.0, "ci": [ 78.5, 81.6 ], "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results, symptoms after month 6 (fatigue 80.0%, 95% CI 78.5-81.6)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "davis-pem-6mo-sf", "cohort_id": "davis-2021-longcovid", "publication_id": "davis-2021", "schema_version": "2.0.0", "measure_id": "sym:post-exertional-malaise", "measure_verbatim": "post-exertional malaise", "population": { "scope": "subgroup", "stratum": null, "denominator_basis": "symptomatic_subset", "n_assessed": 3762 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 3762, "percent": 73.3, "ci": [ 71.5, 75.1 ], "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results, symptoms after month 6 (post-exertional malaise 73.3%, 95% CI 71.5-75.1)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "davis-cognitive-6mo-sf", "cohort_id": "davis-2021-longcovid", "publication_id": "davis-2021", "schema_version": "2.0.0", "measure_id": "sym:cognitive-dysfunction", "measure_verbatim": "cognitive dysfunction", "population": { "scope": "subgroup", "stratum": null, "denominator_basis": "symptomatic_subset", "n_assessed": 3762 }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 3762, "percent": 58.4, "ci": [ 56.5, 60.2 ], "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results, symptoms after month 6 (cognitive dysfunction 58.4%, 95% CI 56.5-60.2)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "phosp-covid", "name": "PHOSP-COVID (UK post-hospitalisation COVID-19)", "aliases": [ "Post-hospitalisation COVID-19 study" ], "outbreak_event": "COVID-19 pandemic (UK, 2020-21)", "pathogen_id": "sars-cov-2", "pathogen_class": "virus", "exposure_ascertainment": "mixed", "design": "prospective_non_inception", "denominator_defined": "yes", "denominator_method": "Adults discharged from 39 UK hospitals after confirmed or clinically diagnosed COVID-19 (discharged 5 Mar 2020 - 31 Mar 2021), recruited to a multicentre prospective cohort.", "recruitment_source": "hospital", "time_zero_definition": "Hospital discharge following acute COVID-19", "time_zero_precision": "month", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 2320, "n_analysed": 1965, "followups": [ { "months": 5, "n_assessed": 1965, "n_lost": null }, { "months": 12, "n_assessed": 804, "n_lost": null } ], "max_followup_months": 12, "instruments": [ "sf-36" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "lab_panel", "imaging" ], "specimens_collected": true, "specimen_types": [ "serum", "plasma", "pbmc" ], "acute_phase_specimens": "no", "storage": null, "biobank_status": "active", "consent_future_use": "broad", "external_access": "collaboration_only", "contact": null, "registration_id": "ISRCTN10980107", "funders": [ "UK Research and Innovation", "National Institute for Health Research (NIHR)" ], "conflicts": null, "data_availability": "Access via the PHOSP-COVID consortium data-sharing process.", "notes": "Large multicentre prospective cohort of hospitalised COVID-19 survivors with an active biobank and deep phenotyping/inflammation profiling. Full recovery was reported by only about a quarter of participants and did not improve meaningfully between 5 months and 1 year. No unexposed comparison group.", "publications": [ { "id": "evans-2021", "title": "Physical, cognitive, and mental health impacts of COVID-19 after hospitalisation (PHOSP-COVID): a UK multicentre, prospective cohort study", "authors": "Evans RA, McAuley H, Harrison EM, et al. (PHOSP-COVID Collaborative Group)", "year": 2021, "journal": "The Lancet Respiratory Medicine", "doi": "10.1016/S2213-2600(21)00383-0", "pmid": "34627560", "url": "https://pubmed.ncbi.nlm.nih.gov/34627560/", "open_access": true, "is_primary_cohort_paper": true }, { "id": "phosp-2022-1yr", "title": "Clinical characteristics with inflammation profiling of long COVID and association with 1-year recovery following hospitalisation in the UK: a prospective observational study", "authors": "PHOSP-COVID Collaborative Group.", "year": 2022, "journal": "The Lancet Respiratory Medicine", "doi": "10.1016/S2213-2600(22)00127-8", "pmid": "35472304", "url": "https://pubmed.ncbi.nlm.nih.gov/35472304/", "open_access": true, "is_primary_cohort_paper": false } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "phosp-recovered-5mo", "cohort_id": "phosp-covid", "publication_id": "phosp-2022-1yr", "schema_version": "2.0.0", "measure_id": "func:recovery", "measure_verbatim": "felt fully recovered at 5 months after discharge", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 1965 }, "timing": { "timepoint_months": 5, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 501, "denominator": 1965, "percent": 25.5, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (501 of 1965, 25.5% fully recovered at 5 months)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "phosp-recovered-1yr", "cohort_id": "phosp-covid", "publication_id": "phosp-2022-1yr", "schema_version": "2.0.0", "measure_id": "func:recovery", "measure_verbatim": "felt fully recovered at 1 year after discharge", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 804 }, "timing": { "timepoint_months": 12, "timepoint_band": "6-12mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": 232, "denominator": 804, "percent": 28.9, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (232 of 804, 28.9% fully recovered at 1 year)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "harmonisation_ruleset": "pais-harmony-v1", "id": "postvac-germany-survey", "name": "Post-Vac-Syndrom Deutschland patient survey", "aliases": [ "PVS Deutschland Umfrage" ], "outbreak_event": "COVID-19 vaccination campaign (2021-)", "pathogen_id": "covid-19-vaccine", "pathogen_class": "vaccine", "exposure_ascertainment": "self_report", "design": "survey", "denominator_defined": "no", "denominator_method": null, "recruitment_source": "patient_organisation", "time_zero_definition": "COVID-19 vaccination; self-reported post-vaccination symptoms", "time_zero_precision": "week", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 777, "n_analysed": 777, "followups": [ { "months": 6, "n_assessed": 777, "n_lost": null } ], "max_followup_months": 6, "instruments": [], "case_definition": "none", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "not_applicable", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "not_applicable", "external_access": "open_application", "contact": null, "registration_id": null, "funders": [ "Post-Vac-Syndrom Deutschland (patient initiative)" ], "conflicts": "Run by a patient-advocacy initiative; self-selected respondents recruited from private affected-persons groups and a non-public forum.", "data_availability": "Results published on the initiative's website.", "notes": "Grey-literature patient-organisation survey (n=777, Feb-Jun 2022) of people reporting post-vaccination symptoms in Germany. Not peer-reviewed and with no DOI/PMID, so it is admitted only as a flagged grey-literature source (allowed by a URL-only publication record) to represent the patient-advocacy end of the spectrum honestly. Most figures are subgroup percentages (e.g. among affected women); onset was within one week in 57% and within two weeks in a further 21%. Prevalence figures cannot be interpreted as population estimates.", "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": "Self-report symptom checklist across multiple body systems; many figures reported for the female subgroup only.", "related_cohorts": [ { "id": "vitae-survey", "relation": "sibling_analysis" }, { "id": "yale-listen-pvs", "relation": "sibling_analysis" } ], "flags": [ "grey_literature", "not_peer_reviewed", "patient_reported", "self_selected", "no_control", "unverified_source" ], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (verified against source webpage)", "publications": [ { "id": "pvs-de-2022", "title": "Post-Vac-Syndrom Deutschland: Ergebnisse der Betroffenen-Umfrage (patient survey results)", "authors": "Post-Vac-Syndrom Deutschland (patient initiative)", "year": 2022, "journal": null, "type": "grey_literature", "url": "https://postvac.org/pvs_umfrage_ergebnisse/", "open_access": true, "is_primary_cohort_paper": true } ], "observations": [ { "id": "pvsde-paresthesia", "cohort_id": "postvac-germany-survey", "publication_id": "pvs-de-2022", "schema_version": "2.0.0", "measure_id": "sym:paresthesia", "measure_verbatim": "tingling / numbness sensations (most common symptom; reported by women)", "population": { "scope": "subgroup", "stratum": { "variable": "sex", "level": "female" }, "denominator_basis": "symptomatic_subset", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "current", "is_cumulative": false }, "method": { "ascertainment": "open_ended_report", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_applicable" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 57, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Survey results page (tingling/numbness 57% of women)", "extracted_by": "mh", "extracted_on": "2026-07-20", "verified_by": "OSMF research-tracker", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "prevail-iii-ebola", "name": "PREVAIL III Ebola Survivor Cohort", "aliases": [ "PREVAIL III", "Partnership for Research on Ebola Virus in Liberia III" ], "outbreak_event": "West Africa Ebola epidemic 2014–2016 (Liberia)", "pathogen_id": "ebola-virus", "pathogen_class": "virus", "exposure_ascertainment": "serology", "design": "prospective_non_inception", "denominator_defined": "yes", "denominator_method": "Ebola virus disease survivors (antibody-confirmed) and their close contacts enrolled in Liberia and followed longitudinally.", "recruitment_source": "mixed", "time_zero_definition": "Enrolment after recovery from acute Ebola virus disease", "time_zero_precision": "month", "control_group": "household_contacts", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 1500, "n_analysed": 1126, "followups": [ { "months": 6, "n_assessed": null, "n_lost": null }, { "months": 12, "n_assessed": null, "n_lost": null }, { "months": 60, "n_assessed": null, "n_lost": null } ], "max_followup_months": 60, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "imaging", "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum", "plasma", "other" ], "acute_phase_specimens": "no", "storage": "not_reported", "biobank_status": "active", "consent_future_use": "unknown", "external_access": "collaboration_only", "contact": "PREVAIL / NIAID (published study contact)", "registration_id": "NCT02431923", "funders": [ "National Institute of Allergy and Infectious Diseases (NIAID/NIH)", "Liberian Ministry of Health" ], "conflicts": null, "data_availability": null, "notes": "Large observational natural-history cohort with a close-contact comparator, banked specimens, and up to 5 years of 6-monthly follow-up. Documented ocular (uveitis), musculoskeletal, neurologic and other sequelae plus viral persistence in immune-privileged sites. n_enrolled shown is the target survivor count; ~1,126 survivors enrolled by 2017 (plus ~2,700 contacts). Quantitative findings pending human extraction from source tables.", "publications": [ { "id": "prevail-iii-2019", "title": "A Longitudinal Study of Ebola Sequelae in Liberia", "authors": "PREVAIL III Study Group", "year": 2019, "journal": "New England Journal of Medicine", "doi": "10.1056/NEJMoa1805435", "pmid": "30855742", "url": "https://pubmed.ncbi.nlm.nih.gov/30855742/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "extensions": { "ebola": { "baseline_ocular_exam_n": 789, "uveitis_laterality": "not_reported" } }, "observations": [ { "id": "prevail-uveitis", "cohort_id": "prevail-iii-ebola", "publication_id": "prevail-iii-2019", "schema_version": "2.0.0", "measure_id": "func:any-persistent-symptom", "measure_verbatim": "uveitis (ocular sequela) significantly more prevalent among survivors than close contacts", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 6, "timepoint_band": "3-6mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": { "status": "measured_not_reported" }, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (uveitis among six symptoms significantly more common in survivors vs contacts; exact percentages pending extraction)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "marimoutou-2012-gendarmes", "name": "Réunion chikungunya gendarmes comparative cohort (Marimoutou)", "aliases": [ "French military policemen chikungunya cohort" ], "outbreak_event": "Réunion chikungunya outbreak 2005-06", "pathogen_id": "chikungunya-virus", "pathogen_class": "virus", "exposure_ascertainment": "serology", "design": "retrospective_cohort", "denominator_defined": "yes", "denominator_method": "Occupational cohort of French gendarmes deployed on Réunion during the 2006 outbreak, classified by CHIKV serostatus; uninfected (CHIK-) gendarmes of the same force serve as an occupationally comparable unexposed group.", "recruitment_source": "occupational", "time_zero_definition": "Acute chikungunya infection during the 2006 Réunion outbreak", "time_zero_precision": "quarter", "control_group": "unexposed_unmatched", "control_matching_variables": [ "occupation", "deployment setting" ], "n_source_population": null, "n_enrolled": 382, "n_analysed": 382, "followups": [ { "months": 30, "n_assessed": 382, "n_lost": null } ], "max_followup_months": 30, "instruments": [ "sf-36", "somatic-symptom-self-report" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "no", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "French Military Health Service" ], "conflicts": null, "data_availability": null, "notes": "Comparative cohort of 85 CHIKV-infected vs 297 uninfected gendarmes assessed 30 months after the outbreak, with occupationally comparable unexposed controls and lower quality of life plus higher rheumatic, headache and fatigue morbidity in the infected. One of the strongest comparative symptom datasets in the chikungunya literature; per-symptom prevalence percentages are reported in the paper's tables (behind a subscription) and have not yet been extracted, so symptom_findings are intentionally empty pending full-text verification.", "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": "Rheumatic, general and quality-of-life symptoms compared between CHIK+ and CHIK-; numeric per-symptom prevalences await full-text extraction.", "related_cohorts": [ { "id": "telechik-reunion", "relation": "sibling_analysis" }, { "id": "schilte-2013-chikungunya-reunion", "relation": "sibling_analysis" } ], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "publications": [ { "id": "marimoutou-2012", "title": "Morbidity and impaired quality of life 30 months after chikungunya infection: comparative cohort of infected and uninfected French military policemen in Reunion Island", "authors": "Marimoutou C, Vivier E, Oliver M, Boutin JP, Simon F.", "year": 2012, "journal": "Medicine (Baltimore)", "doi": "10.1097/MD.0b013e318260b604", "pmid": "22732952", "url": "https://pubmed.ncbi.nlm.nih.gov/22732952/", "open_access": false, "is_primary_cohort_paper": true } ], "harmonisation_ruleset": "pais-harmony-v1", "observations": [] }, { "schema_version": "2.0.0", "id": "schilte-2013-chikungunya-reunion", "name": "Réunion chikungunya viremic inception cohort (Schilte)", "aliases": [ "Réunion 2006 chikungunya 36-month cohort" ], "outbreak_event": "Réunion chikungunya outbreak 2005-06", "pathogen_id": "chikungunya-virus", "pathogen_class": "virus", "exposure_ascertainment": "pcr", "design": "prospective_inception", "denominator_defined": "partial", "denominator_method": "Patients with RT-PCR-confirmed acute chikungunya viraemia during the 2006 Réunion outbreak, enrolled at the acute phase and followed for 3 years.", "recruitment_source": "outpatient_clinic", "time_zero_definition": "RT-PCR-confirmed acute chikungunya viraemia", "time_zero_precision": "month", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 180, "n_analysed": 180, "followups": [ { "months": 6, "n_assessed": null, "n_lost": null }, { "months": 15, "n_assessed": null, "n_lost": null }, { "months": 36, "n_assessed": null, "n_lost": null } ], "max_followup_months": 36, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum", "plasma" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "Institut Pasteur", "INSERM" ], "conflicts": null, "data_availability": null, "notes": "Inception cohort defined by acute RT-PCR viraemia (not just serology), with banked acute-phase specimens and 3-year follow-up of chronic arthralgia. A rarer, stronger complement to the serology-ascertained TELECHIK cohort on the same outbreak.", "publications": [ { "id": "schilte-2013", "title": "Chikungunya virus-associated long-term arthralgia: a 36-month prospective longitudinal study", "authors": "Schilte C, Staikowsky F, Couderc T, et al.", "year": 2013, "journal": "PLoS Neglected Tropical Diseases", "doi": "10.1371/journal.pntd.0002137", "pmid": "23556021", "url": "https://pubmed.ncbi.nlm.nih.gov/23556021/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [ { "id": "telechik-reunion", "relation": "sibling_analysis" }, { "id": "marimoutou-2012-gendarmes", "relation": "sibling_analysis" } ], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "schilte-arthralgia-36mo", "cohort_id": "schilte-2013-chikungunya-reunion", "publication_id": "schilte-2013", "schema_version": "2.0.0", "measure_id": "sym:arthralgia", "measure_verbatim": "experienced chikungunya-associated arthralgia during the 3-year follow-up", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 180 }, "timing": { "timepoint_months": 36, "timepoint_band": "24mo+", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 180, "percent": 60, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Abstract (about 60% experienced arthralgia over 3 years)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "sejvar-wnv-neuroinvasive", "name": "Sejvar West Nile Neuroinvasive Disease Cohort", "aliases": [ "WNV neuroinvasive prospective cohort" ], "outbreak_event": null, "pathogen_id": "west-nile-virus", "pathogen_class": "virus", "exposure_ascertainment": "serology", "design": "prospective_inception", "denominator_defined": "yes", "denominator_method": "Patients with West Nile virus neuroinvasive disease confirmed by CSF IgM, enrolled during acute illness.", "recruitment_source": "hospital", "time_zero_definition": "Acute West Nile neuroinvasive disease presentation", "time_zero_precision": "week", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 55, "n_analysed": 55, "followups": [ { "months": 0.5, "n_assessed": null, "n_lost": null }, { "months": 1, "n_assessed": null, "n_lost": null }, { "months": 3, "n_assessed": null, "n_lost": null } ], "max_followup_months": 3, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum", "csf" ], "acute_phase_specimens": "yes", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": "NCT00138463", "funders": [ "National Institutes of Health (USA)" ], "conflicts": null, "data_availability": null, "notes": "Small prospective inception cohort of confirmed neuroinvasive disease with structured serial assessment to 90 days. Short follow-up and no control group; captures acute-to-subacute neurological recovery.", "publications": [ { "id": "sejvar-2014", "title": "West Nile virus neuroinvasive disease: neurological manifestations and prospective longitudinal outcomes", "authors": "Sejvar JJ, et al.", "year": 2014, "journal": "BMC Infectious Diseases", "pmid": "24884681", "url": "https://pubmed.ncbi.nlm.nih.gov/24884681/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "wnv-weakness-onset", "cohort_id": "sejvar-wnv-neuroinvasive", "publication_id": "sejvar-2014", "schema_version": "2.0.0", "measure_id": "func:any-persistent-symptom", "measure_verbatim": "limb weakness at initial clinical presentation", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 55 }, "timing": { "timepoint_months": 0, "timepoint_band": "acute", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 55, "percent": 49, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (49% weakness, 35% tremor, 16% cranial neuropathy at presentation)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "telechik-reunion", "name": "TELECHIK cohort (Réunion chikungunya)", "aliases": [ "TELECHIK survey", "SEROCHIK/TELECHIK" ], "outbreak_event": "Réunion chikungunya outbreak 2005-06", "pathogen_id": "chikungunya-virus", "pathogen_class": "virus", "exposure_ascertainment": "serology", "design": "retrospective_cohort", "denominator_defined": "yes", "denominator_method": "Random population sample drawn from the SEROCHIK population-based serosurvey on Réunion island; participants classified by CHIKV serostatus (IgG).", "recruitment_source": "population_registry", "time_zero_definition": "Acute chikungunya infection during the 2005-06 Réunion outbreak (serologically ascertained retrospectively)", "time_zero_precision": "quarter", "control_group": "unexposed_unmatched", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 1094, "n_analysed": 1094, "followups": [ { "months": 24, "n_assessed": 1094, "n_lost": null } ], "max_followup_months": 34, "instruments": [ "somatic-symptom-self-report" ], "case_definition": "author_defined", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": true, "specimen_types": [ "serum" ], "acute_phase_specimens": "no", "storage": null, "biobank_status": "unknown", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "INSERM", "French Ministry of Health" ], "conflicts": null, "data_availability": null, "notes": "Population-based cohort with a seronegative comparator group (582 CHIK- vs 512 CHIK+), interviewed on average 2 years after infection (range 15-34 months, median 23.7). One of the few post-infectious cohorts with a true unexposed control drawn from the same population, allowing attributable-fraction estimation (~60% of polyarthralgia attributable to CHIKV). Ascertainment was retrospective/serological, so acute-phase data are absent.", "publications": [ { "id": "gerardin-2011", "title": "Perceived morbidity and community burden after a Chikungunya outbreak: the TELECHIK survey, a population-based cohort study", "authors": "Gérardin P, Fianu A, Malvy D, et al.", "year": 2011, "journal": "BMC Medicine", "doi": "10.1186/1741-7015-9-5", "pmid": "21235760", "url": "https://pubmed.ncbi.nlm.nih.gov/21235760/", "open_access": true, "is_primary_cohort_paper": true }, { "id": "duvignaud-2018", "title": "Rheumatism and chronic fatigue, the two facets of post-chikungunya disease: the TELECHIK cohort study on Reunion island", "authors": "Duvignaud A, Fianu A, Bertolotti A, et al.", "year": 2018, "journal": "Epidemiology and Infection", "doi": "10.1017/S0950268818000031", "pmid": "29486812", "url": "https://pubmed.ncbi.nlm.nih.gov/29486812/", "open_access": true, "is_primary_cohort_paper": false } ], "symptom_inventory_scope": "targeted_panel", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [ { "id": "schilte-2013-chikungunya-reunion", "relation": "sibling_analysis" }, { "id": "marimoutou-2012-gendarmes", "relation": "sibling_analysis" } ], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "telechik-msk-24mo", "cohort_id": "telechik-reunion", "publication_id": "gerardin-2011", "schema_version": "2.0.0", "measure_id": "sym:arthralgia", "measure_verbatim": "musculoskeletal pain reported ~2 years after infection (43% in CHIKV-positive vs 17% in CHIKV-negative)", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 512 }, "timing": { "timepoint_months": 24, "timepoint_band": "12-24mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 512, "percent": 43.0, "ci": null, "precision": "approximate" }, "comparator": { "group": "unexposed_unmatched", "value": { "type": "proportion", "percent": 17.0, "precision": "exact", "denominator": 582 }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (musculoskeletal pain 43% in CHIK+ vs 17% in CHIK-)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "telechik-lrmsp-sf", "cohort_id": "telechik-reunion", "publication_id": "duvignaud-2018", "schema_version": "2.0.0", "measure_id": "sym:arthralgia", "measure_verbatim": "long-lasting rheumatic musculoskeletal pain", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 512 }, "timing": { "timepoint_months": 24, "timepoint_band": "12-24mo", "reference_period": "since_infection", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 512, "percent": 29.9, "ci": null, "precision": "derived" }, "comparator": { "group": "seronegative_contacts", "value": { "type": "proportion", "percent": 8.9, "precision": "exact", "denominator": 582 }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Weighted prevalence, CHIKV+ vs CHIKV- (LRMSP 29.9% vs 8.9%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "telechik-icf-sf", "cohort_id": "telechik-reunion", "publication_id": "duvignaud-2018", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "idiopathic chronic fatigue", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 512 }, "timing": { "timepoint_months": 24, "timepoint_band": "12-24mo", "reference_period": "since_infection", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 512, "percent": 34.3, "ci": null, "precision": "derived" }, "comparator": { "group": "seronegative_contacts", "value": { "type": "proportion", "percent": 12.7, "precision": "exact", "denominator": 582 }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Weighted prevalence, CHIKV+ vs CHIKV- (idiopathic chronic fatigue 34.3% vs 12.7%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "telechik-cfslike-sf", "cohort_id": "telechik-reunion", "publication_id": "duvignaud-2018", "schema_version": "2.0.0", "measure_id": "case-def:cfs-like", "measure_verbatim": "chronic fatigue syndrome-like illness", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 512 }, "timing": { "timepoint_months": 24, "timepoint_band": "12-24mo", "reference_period": "since_infection", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": "somatic-symptom-self-report", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 512, "percent": 21.5, "ci": null, "precision": "derived" }, "comparator": { "group": "seronegative_contacts", "value": { "type": "proportion", "percent": 6.7, "precision": "exact", "denominator": 582 }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Weighted prevalence, CHIKV+ vs CHIKV- (CFS-like illness 21.5% vs 6.7%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "moldofsky-post-sars", "name": "Toronto Chronic Post-SARS Cohort (Moldofsky)", "aliases": [ "chronic post-SARS syndrome case-control" ], "outbreak_event": "SARS outbreak 2003 (Toronto)", "pathogen_id": "sars-cov-1", "pathogen_class": "virus", "exposure_ascertainment": "clinical_diagnosis", "design": "case_control", "denominator_defined": "no", "denominator_method": null, "recruitment_source": "self_referral", "time_zero_definition": "Recovery from acute SARS (assessed 13–36 months later)", "time_zero_precision": "month", "control_group": "healthy_convenience", "control_matching_variables": [ "sex" ], "n_source_population": null, "n_enrolled": 29, "n_analysed": 29, "followups": [ { "months": 24, "n_assessed": 22, "n_lost": null } ], "max_followup_months": 36, "instruments": [ "polysomnography", "somatic-symptom-self-report" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "polysomnography" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "no", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "not_applicable", "external_access": "closed", "contact": null, "registration_id": null, "funders": [], "conflicts": null, "data_availability": null, "notes": "Deliberately included as a methodologically weak but historically important study: small (22 cases, 7 controls), cross-sectional case-control with a convenience control group, but the first to characterize an ME/CFS/fibromyalgia-like chronic syndrome after a coronavirus — an early precedent for Long COVID.", "publications": [ { "id": "moldofsky-2011", "title": "Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study", "authors": "Moldofsky H, Patcai J", "year": 2011, "journal": "BMC Neurology", "doi": "10.1186/1471-2377-11-37", "pmid": "21435231", "url": "https://pubmed.ncbi.nlm.nih.gov/21435231/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "single_domain", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "postsars-fatigue", "cohort_id": "moldofsky-post-sars", "publication_id": "moldofsky-2011", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "persistent fatigue among post-SARS subjects unable to return to former occupation", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 22 }, "timing": { "timepoint_months": 24, "timepoint_band": "12-24mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 22, "percent": { "status": "measured_not_reported" }, "ci": null, "precision": "approximate" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (chronic fatigue, myalgia, weakness, depression, non-restorative sleep vs healthy controls)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "harmonisation_ruleset": "pais-harmony-v1", "id": "vitae-survey", "name": "VITAE vaccine-injury survey (Halma & Varon)", "aliases": [ "Vaccination Injury Treatment and Access to Essential Care survey" ], "outbreak_event": "COVID-19 vaccination campaign (2021-)", "pathogen_id": "covid-19-vaccine", "pathogen_class": "vaccine", "exposure_ascertainment": "self_report", "design": "survey", "denominator_defined": "no", "denominator_method": null, "recruitment_source": "patient_organisation", "time_zero_definition": "COVID-19 vaccination; self-reported vaccine injury / post-vaccination syndrome", "time_zero_precision": "year", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 706, "n_analysed": 706, "followups": [ { "months": 24, "n_assessed": 706, "n_lost": null } ], "max_followup_months": 24, "instruments": [], "case_definition": "none", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "not_applicable", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "not_applicable", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "not reported" ], "conflicts": "Lead author is affiliated with the Open Source Medicine Foundation, which maintains this database, and with the FLCCC; the survey was distributed through vaccine-injury patient-advocacy networks (self-selected sample).", "data_availability": "Aggregate results in the preprint.", "notes": "Self-selected online survey (n=706) of people self-identifying as COVID-19 vaccine-injured, focused on disease burden and barriers to care rather than clinical symptom prevalence: chronic symptoms >=6 months in 91%, symptoms >2 years in ~80%, and large economic impact (about 70% of those employed dropped an income category; 26% became unemployed due to their condition). Flagged as a non-peer-reviewed preprint, patient-reported, self-selected, uncontrolled, with an author conflict. Included to represent the patient-advocacy end of the vaccine-trigger spectrum, explicitly labelled as such.", "symptom_inventory_scope": "incidental", "n_symptoms_queried": null, "symptom_instrument_note": "Primarily a barriers-to-care / disease-burden instrument, not a symptom-prevalence survey.", "related_cohorts": [ { "id": "yale-listen-pvs", "relation": "sibling_analysis" }, { "id": "postvac-germany-survey", "relation": "sibling_analysis" } ], "flags": [ "preprint", "not_peer_reviewed", "patient_reported", "self_selected", "no_control", "author_conflict" ], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (verified against source PDF)", "publications": [ { "id": "halma-2025-vitae", "title": "Assessing Barriers to Care for the Vaccine Injured: The Vaccination Injury Treatment and Access to Essential Care (VITAE) Survey", "authors": "Halma M, Varon J.", "year": 2025, "journal": "Preprints.org", "type": "preprint", "doi": "10.20944/preprints202501.0567.v1", "url": "https://www.preprints.org/manuscript/202501.0567/v1", "open_access": true, "is_primary_cohort_paper": true } ], "observations": [ { "id": "vitae-chronic-6mo", "cohort_id": "vitae-survey", "publication_id": "halma-2025-vitae", "schema_version": "2.0.0", "measure_id": "func:any-persistent-symptom", "measure_verbatim": "chronic symptoms lasting six months or more post-treatment", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "responders", "n_assessed": 706 }, "timing": { "timepoint_months": 24, "timepoint_band": "24mo+", "reference_period": "since_infection", "is_cumulative": true }, "method": { "ascertainment": "open_ended_report", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_applicable" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 706, "percent": 91.35, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results, Table 3 (chronic symptoms >=6 months in 91.35%)", "extracted_by": "mh", "extracted_on": "2026-07-20", "verified_by": "OSMF research-tracker", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "vitae-unemployed", "cohort_id": "vitae-survey", "publication_id": "halma-2025-vitae", "schema_version": "2.0.0", "measure_id": "func:unable-to-work", "measure_verbatim": "became unemployed due to their condition", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "responders", "n_assessed": 706 }, "timing": { "timepoint_months": 24, "timepoint_band": "24mo+", "reference_period": "since_infection", "is_cumulative": true }, "method": { "ascertainment": "open_ended_report", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_applicable" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 706, "percent": 26.36, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (26.36% became unemployed due to their condition)", "extracted_by": "mh", "extracted_on": "2026-07-20", "verified_by": "OSMF research-tracker", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "id": "walkerton-health-study", "name": "Walkerton Health Study (post-infectious IBS)", "aliases": [ "WHS" ], "outbreak_event": "Walkerton waterborne gastroenteritis outbreak, May 2000 (Ontario, Canada)", "pathogen_id": "campylobacter-ecoli-walkerton", "pathogen_class": "mixed", "exposure_ascertainment": "clinical_diagnosis", "design": "retrospective_cohort", "denominator_defined": "yes", "denominator_method": "Adult Walkerton residents with no prior chronic GI disorder, classified by whether they had acute gastroenteritis during the May 2000 municipal water contamination; residents without acute GE form the unexposed comparison.", "recruitment_source": "community", "time_zero_definition": "May 2000 waterborne gastroenteritis outbreak (Campylobacter jejuni / E. coli O157:H7)", "time_zero_precision": "month", "control_group": "unexposed_unmatched", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 2069, "n_analysed": 2069, "followups": [ { "months": 24, "n_assessed": 2069, "n_lost": null }, { "months": 96, "n_assessed": null, "n_lost": null } ], "max_followup_months": 96, "instruments": [ "rome-criteria-ibs" ], "case_definition": "not_applicable", "pem_assessed": "no", "objective_measures": [ "none" ], "specimens_collected": false, "specimen_types": [], "acute_phase_specimens": "no", "storage": null, "biobank_status": "not_applicable", "consent_future_use": "unknown", "external_access": "unknown", "contact": null, "registration_id": null, "funders": [ "Ontario Ministry of Health and Long-Term Care", "Canadian Institutes of Health Research" ], "conflicts": null, "data_availability": null, "notes": "One of the strongest post-infectious cohorts in the database: a whole-community denominator with a within-town unexposed comparator, quantifying post-infectious IBS after bacterial gastroenteritis (36.2% after clinically suspected GE vs 10.1% without). Non-fatigue outcome (IBS), broadening the syndrome coverage. Exposure was ascertained by self-reported acute illness rather than culture, the main limitation.", "publications": [ { "id": "marshall-2006", "title": "Incidence and epidemiology of irritable bowel syndrome after a large waterborne outbreak of bacterial dysentery", "authors": "Marshall JK, Thabane M, Garg AX, et al. (Walkerton Health Study Investigators)", "year": 2006, "journal": "Gastroenterology", "doi": "10.1053/j.gastro.2006.05.053", "pmid": "16890598", "url": "https://pubmed.ncbi.nlm.nih.gov/16890598/", "open_access": true, "is_primary_cohort_paper": true } ], "symptom_inventory_scope": "single_domain", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "harmonisation_ruleset": "pais-harmony-v1", "observations": [ { "id": "walkerton-piibs-2yr", "cohort_id": "walkerton-health-study", "publication_id": "marshall-2006", "schema_version": "2.0.0", "measure_id": "sym:irritable-bowel-syndrome", "measure_verbatim": "post-infectious irritable bowel syndrome 2 years after outbreak in those with clinically suspected gastroenteritis vs those without acute gastroenteritis", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "unclear", "n_assessed": { "status": "measured_not_reported" } }, "timing": { "timepoint_months": 24, "timepoint_band": "12-24mo", "reference_period": "not_reported", "is_cumulative": false }, "method": { "ascertainment": "unclear", "instrument_id": "rome-criteria-ibs", "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": { "status": "measured_not_reported" }, "percent": 36.2, "ci": null, "precision": "approximate" }, "comparator": { "group": "unexposed_unmatched", "value": { "type": "proportion", "percent": 10.1, "precision": "exact" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results/Abstract (36.2% with suspected GE vs 10.1% without)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] }, { "schema_version": "2.0.0", "harmonisation_ruleset": "pais-harmony-v1", "id": "yale-listen-pvs", "name": "Yale LISTEN post-vaccination syndrome cohort (Krumholz)", "aliases": [ "LISTEN Study post-vaccination syndrome", "Yale PVS registry" ], "outbreak_event": "COVID-19 vaccination campaign (2021-)", "pathogen_id": "covid-19-vaccine", "pathogen_class": "vaccine", "exposure_ascertainment": "self_report", "design": "survey", "denominator_defined": "no", "denominator_method": null, "recruitment_source": "self_referral", "time_zero_definition": "COVID-19 vaccination; self-reported chronic symptoms attributed to it", "time_zero_precision": "month", "control_group": "none", "control_matching_variables": [], "n_source_population": null, "n_enrolled": 241, "n_analysed": 241, "followups": [ { "months": 20, "n_assessed": 241, "n_lost": null } ], "max_followup_months": 20, "instruments": [ "sf-36" ], "case_definition": "none", "pem_assessed": "yes_single_item", "objective_measures": [ "lab_panel" ], "specimens_collected": true, "specimen_types": [ "serum", "plasma", "pbmc" ], "acute_phase_specimens": "no", "storage": null, "biobank_status": "active", "consent_future_use": "unknown", "external_access": "collaboration_only", "contact": null, "registration_id": null, "funders": [ "Yale University (LISTEN Study)" ], "conflicts": null, "data_availability": null, "notes": "Self-selected online registry (Yale LISTEN) of 241 adults reporting post-vaccination syndrome after COVID-19 immunisation, surveyed a median of ~595 days (about 20 months) post-vaccination; no control group. A weak-design but broad symptom characterisation, with a linked immunological/antigen-signature analysis (Bhattacharjee 2025). Included to represent the self-report end of the vaccine-trigger spectrum; not denominator-defined for prevalence.", "symptom_inventory_scope": "comprehensive_inventory", "n_symptoms_queried": null, "symptom_instrument_note": null, "related_cohorts": [], "last_verified": "2026-07-20", "verified_by": "OSMF research-tracker (web-verified against source)", "publications": [ { "id": "krumholz-2023", "title": "Post-Vaccination Syndrome: A Descriptive Analysis of Reported Symptoms and Patient Experiences After Covid-19 Immunization", "authors": "Krumholz HM, Wu Y, Sawano M, et al.", "year": 2023, "journal": "medRxiv (preprint)", "doi": "10.1101/2023.11.09.23298266", "pmid": "37986769", "url": "https://pubmed.ncbi.nlm.nih.gov/37986769/", "open_access": true, "is_primary_cohort_paper": true }, { "id": "bhattacharjee-2025", "title": "Immunological and Antigenic Signatures Associated with Chronic Illnesses after COVID-19 Vaccination", "authors": "Bhattacharjee B, Lu P, Monteiro VS, et al. (incl. Krumholz HM, Iwasaki A)", "year": 2025, "journal": "medRxiv (preprint)", "doi": "10.1101/2025.02.18.25322379", "url": "https://www.medrxiv.org/content/10.1101/2025.02.18.25322379v1", "open_access": true, "is_primary_cohort_paper": false } ], "observations": [ { "id": "listen-exercise-intolerance", "cohort_id": "yale-listen-pvs", "publication_id": "krumholz-2023", "schema_version": "2.0.0", "measure_id": "sym:exercise-intolerance", "measure_verbatim": "exercise intolerance", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 241 }, "timing": { "timepoint_months": 20, "timepoint_band": "12-24mo", "reference_period": "past_7d", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 241, "percent": 71, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (exercise intolerance 71%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "listen-fatigue", "cohort_id": "yale-listen-pvs", "publication_id": "krumholz-2023", "schema_version": "2.0.0", "measure_id": "sym:fatigue", "measure_verbatim": "excessive fatigue", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 241 }, "timing": { "timepoint_months": 20, "timepoint_band": "12-24mo", "reference_period": "past_7d", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 241, "percent": 69, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (excessive fatigue 69%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "listen-brainfog", "cohort_id": "yale-listen-pvs", "publication_id": "krumholz-2023", "schema_version": "2.0.0", "measure_id": "sym:cognitive-dysfunction", "measure_verbatim": "brain fog", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 241 }, "timing": { "timepoint_months": 20, "timepoint_band": "12-24mo", "reference_period": "past_7d", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 241, "percent": 63, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (brain fog 63%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } }, { "id": "listen-numbness", "cohort_id": "yale-listen-pvs", "publication_id": "krumholz-2023", "schema_version": "2.0.0", "measure_id": "sym:paresthesia", "measure_verbatim": "numbness", "population": { "scope": "whole_cohort", "stratum": null, "denominator_basis": "assessed_at_timepoint", "n_assessed": 241 }, "timing": { "timepoint_months": 20, "timepoint_band": "12-24mo", "reference_period": "past_7d", "is_cumulative": false }, "method": { "ascertainment": "structured_checklist", "instrument_id": null, "severity_threshold": null, "blinded_assessment": "not_reported" }, "value": { "type": "proportion", "numerator": { "status": "measured_not_reported" }, "denominator": 241, "percent": 63, "ci": null, "precision": "exact" }, "comparator": { "group": "none", "value": { "status": "not_applicable" }, "effect": null }, "harmonised": null, "provenance": { "source_locator": "Results (numbness 63%)", "extracted_by": null, "extracted_on": null, "verified_by": "OSMF research-tracker (web-verified against source)", "verified_on": "2026-07-20", "extraction_method": "manual" } } ] } ] }