{
  "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 Not peer-reviewed and with no DOI/PMID, so it is admitted only as a flagged grey-literature source (allowed by a URL-only publication record) to represent the patient-advocacy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" }
    }
  ]
}