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Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 228 days ago

Decode-ME

Dataset

Documentation

Description:
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.

Coverage

Spatial:
United Kingdom
Typical Age Range:
0-150

Provenance

Origin

Purposes:
Study

Temporal

Accrual Periodicity:
Static
Start Date:
26 October 2021
Time Lag:
Not applicable

Accessibility

Access

Delivery Lead Time:
Not applicable
Jurisdictions:
GB
Data Controller:
University of Edinburgh

Usage

Resource Creators:
University of Edinburgh

Format and Standards

Vocabulary Encoding Schemes:
OTHER
Languages:
en
Formats:
questionnaire

Observations

Statistical Population
Population Description
Population Size
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 October 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 October 2021