Bookmarks

Decode-ME

Population Size

25,000

People

Population Size statistic card

Years

2021

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

Geographic coverage statistic card

Lead time

Not applicable

Lead time statistic card

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

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

https://www.decodeme.org.uk/

Time to dataset access

Not applicable

Access method category

Varies based on project

Jurisdiction

GB

Data Controller

University of Edinburgh

Dataset Types: Health and disease

Collection Sources:

end of page