Bookmarks
Decode-ME
Population Size
25,000
People
Years
2021
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
Lead time
Not applicable
Summary
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic disease affecting an estimated 250,000 people in the UK. DecodeME is the world’s largest ME/CFS genetic study. It has Patient and Public Involvement at its heart.
Documentation
DecodeME aims to find genetic causes of why people become ill with ME/CFS. It aims to recruit 25,000 participants in the UK who have been diagnosed with ME/CFS by a health professional. Participants are assessed according to Canadian Consensus and Institute of Medicine (NAM) criteria. Participant data has been collected using the CureME Questionnaire with additional questions. 5,000 of these participants will have been diagnosed with ME/CFS following COVID-19 infection. Phenotype data include information relating to post-exertional malaise, fatigue and pain symptoms.
Dataset type
Health and disease
Dataset sub-type
Not applicable
Dataset population size
25000
Keywords
Alleviate, Pain, Pain Hub, Fatigue
Observations
Observed Node | Disambiguating Description | Measured Value | Measured Property | Observation Date |
|---|---|---|---|---|
Persons | The study aims to recruit 25,000 patients in the UK who have been diagnosed with ME/CFS by a health professional | 25000 | Count | 26 Oct 2021 |
Persons | The study aims to recruit 5,000 of participants who have been diagnosed with ME/CFS following COVID-19 infection. | 5000 | Count | 26 Oct 2021 |
Persons | The study aims to recruit 5,000 of participants who have been diagnosed with ME/CFS following COVID-19 infection. | 5000 | Count | 26 Oct 2021 |
Provenance
Purpose of dataset collection
Study
Image contrast
Not stated
Biological sample availability
None/not available
Details
Publishing frequency
Static
Version
1.0.0
Modified
08/10/2024
Citation Requirements
University of Edinburgh
Coverage
Start date
26/10/2021
Time lag
Not applicable
Geographic coverage
United Kingdom
Maximum age range
150
Accessibility
Language
en
Controlled vocabulary
OTHER
Format
questionnaire
Data Access Request
Dataset pipeline status
Not available
Access rights
Time to dataset access
Not applicable
Access method category
Varies based on project
Jurisdiction
GB
Data Controller
University of Edinburgh