With your help and support, DecodeME has built the world’s largest data set on ME/CFS.

The DecodeME data access process will permit approved researchers to access this data set for use in other own research projects.

We are opening the application process to researchers employed by reputable and bona fide institutions, who can demonstrate relevant experience and expertise.

All applications for data will be reviewed thoroughly by our Data Access Committee and will only be approved if both the applicant and the project meet strict eligibility criteria, including on PPI involvement, ethics, data security best practice, and the potential for an outcome that will benefit the ME/CFS community. The committee will make sure that we only share DecodeME data with studies that meet our high standards and are ethical and worthwhile.

Consistent with our rigorous data privacy policy, any data shared will be de-identified and will only be shared if participant consent has been given.

Before sharing any data, approved applicants will sign a legal contract to ensure their correct handling and use of the data.

Watch our webinars to find out more

A partnership between

Action for ME logo
Forward ME Logo
UKRI MRC Human Genetics Unit logo
National Institute for health research