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Patient-Led Long COVID international cohort (Davis 2021)

source record (JSON) · schema v2.0.0 · CC BY 4.0

Design notes & limitations. 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.

Identity & trigger

Cohort id
davis-2021-longcovid
Aliases
Patient-Led Research Collaborative Long COVID survey
Outbreak / event
COVID-19 pandemic (onset before June 2020)
Pathogen
SARS-CoV-2 (Virus)
Exposure ascertainment
Mixed

Design

Design
Survey
Denominator defined
No
Denominator method
n/r
Recruitment
patient organisation
Time zero
Self-reported onset of suspected or confirmed COVID-19 (illness lasting >28 days, onset prior to June 2020) (week)
Control group
None

Size & attrition

Enrolled
3762
Analysed / enrolled
3762/3762 (100%)
Max follow-up (months)
7

Biospecimens

Specimens
No
Types
none
Acute-phase specimens
No
Biobank
N/A
External access
Unknown

Observations (7)

Symptoms

80% (78.5–81.6) Proportion

Measure
Fatigue sym:fatigue
As worded
“fatigue reported among respondents symptomatic after month 6”
Population
whole cohort · denominator Unclear · N=measured, not reported
Timing
6 mo (3-6 mo) · ref Not reported
Method
Unclear · Structured symptom questionnaire (author-defined)
Comparator
no comparator
Comparability signature
ac23b7c108 — measure sym:fatigue · Unclear · ref Not reported · denom Unclear · 3-6 mo · Proportion
Provenance
Results (most likely symptoms after month 6) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-20

73.3% (71.5–75.1) Proportion

Measure
Post-exertional malaise sym:post-exertional-malaise
As worded
“post-exertional malaise reported among respondents symptomatic after month 6”
Population
whole cohort · denominator Unclear · N=measured, not reported
Timing
6 mo (3-6 mo) · ref Not reported
Method
Unclear · Structured symptom questionnaire (author-defined)
Comparator
no comparator
Comparability signature
cf0c586af0 — measure sym:post-exertional-malaise · Unclear · ref Not reported · denom Unclear · 3-6 mo · Proportion
Provenance
Results (most likely symptoms after month 6) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-20

58.4% (56.5–60.2) Proportion

Measure
Cognitive dysfunction sym:cognitive-dysfunction
As worded
“cognitive dysfunction reported among respondents symptomatic after month 6”
Population
whole cohort · denominator Unclear · N=measured, not reported
Timing
6 mo (3-6 mo) · ref Not reported
Method
Unclear · Structured symptom questionnaire (author-defined)
Comparator
no comparator
Comparability signature
f62e0e5b9f — measure sym:cognitive-dysfunction · Unclear · ref Not reported · denom Unclear · 3-6 mo · Proportion
Provenance
Results (most likely symptoms after month 6) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-20

80% (78.5–81.6) Proportion

Measure
Fatigue sym:fatigue
As worded
“fatigue”
Population
subgroup · denominator Symptomatic subset · N=n=3762
Timing
6 mo (3-6 mo) · ref Current
Method
Structured checklist · Structured symptom questionnaire (author-defined)
Comparator
no comparator
Comparability signature
0d684c8005 — measure sym:fatigue · Structured checklist · ref Current · denom Symptomatic subset · 3-6 mo · Proportion
Provenance
Results, symptoms after month 6 (fatigue 80.0%, 95% CI 78.5-81.6) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-20

73.3% (71.5–75.1) Proportion

Measure
Post-exertional malaise sym:post-exertional-malaise
As worded
“post-exertional malaise”
Population
subgroup · denominator Symptomatic subset · N=n=3762
Timing
6 mo (3-6 mo) · ref Current
Method
Structured checklist · Structured symptom questionnaire (author-defined)
Comparator
no comparator
Comparability signature
a3e8d4514b — measure sym:post-exertional-malaise · Structured checklist · ref Current · denom Symptomatic subset · 3-6 mo · Proportion
Provenance
Results, symptoms after month 6 (post-exertional malaise 73.3%, 95% CI 71.5-75.1) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-20

58.4% (56.5–60.2) Proportion

Measure
Cognitive dysfunction sym:cognitive-dysfunction
As worded
“cognitive dysfunction”
Population
subgroup · denominator Symptomatic subset · N=n=3762
Timing
6 mo (3-6 mo) · ref Current
Method
Structured checklist · Structured symptom questionnaire (author-defined)
Comparator
no comparator
Comparability signature
6e6cca3ee5 — measure sym:cognitive-dysfunction · Structured checklist · ref Current · denom Symptomatic subset · 3-6 mo · Proportion
Provenance
Results, symptoms after month 6 (cognitive dysfunction 58.4%, 95% CI 56.5-60.2) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-20

Functional outcomes

22.3% Proportion

Measure
Not working due to illness func:unable-to-work
As worded
“not working at time of survey due to illness (a further 45.2% required a reduced work schedule)”
Population
whole cohort · denominator Unclear · N=measured, not reported
Timing
7 mo (6-12 mo) · ref Not reported
Method
Unclear · Structured symptom questionnaire (author-defined)
Comparator
no comparator
Comparability signature
f9f068b853 — measure func:unable-to-work · Unclear · ref Not reported · denom Unclear · 6-12 mo · Proportion
Provenance
Results (employment impact) · Manual · verified OSMF research-tracker (web-verified against source) on 2026-07-20

Publications

Provenance & verification

Registration
n/r
Funders
Patient-Led Research Collaborative (self-funded)
Related cohorts
none
Symptom-inventory scope
Comprehensive inventory
Last verified
2026-07-20 — OSMF research-tracker (web-verified against source)