DecodeME will only consider giving Data Access 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, which includes Patient and Public Involvement (PPI) representation. The committee will make sure that we only share DecodeME data with studies that meet our high standards and are ethical and worthwhile.

Applications 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.

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

Only the data required for each research project will be shared. We won’t share personal details that could identify you.

The new researchers must agree to treat your data with respect and to keep it secure.

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

All data and samples will either be destroyed or returned to DecodeMe at the end of the agreed (and legally contracted) access period.

You can read the full DecodeME data access policy here.

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