Researchers working at universities, in government departments, at charities or other organisations (including commercial companies) across the world can apply to access our research data.

Our Data Access Committee will assess each application. We’ll only let researchers have access to our data if they’re from reputable scientific institutions and are doing ethically approved projects. Our committee will decide whether the researcher needs the requested data to conduct the research, and whether they’ll do the project in line with the commitments we’ve made to you. We’ll only share data in a way that protects your confidentiality and we’ll only do it with your consent.

A DecodeME committee of a scientist, a patient and a charity representative will strictly control access to the data.

  • We won’t share any personal details that could identify you, or any of your NHS health data.
  • The researchers must agree to treat your data with respect and to keep it secure.
  • They might work for universities or medical companies, and might be in other countries.

The consent form will ask you if you’re happy to share your 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