DecodeME launches data access process

29 April 2024

  • With your help, DecodeME has built the world’s largest data set on ME/CFS.
  • 86% of DecodeME participants consented to sharing their de-identified data with other researchers and 95% of participants consented to being recontacted for new research projects.
  • By allowing other researchers to access this data, we hope to accelerate research towards possible diagnostic tests and treatments for ME/CFS.
  • The Data Access application process is now open.
  • All applications will be reviewed by our Data Access Committee and will only be approved if they meet our high standards, are ethical and worthwhile.


We have an important project update to share with you.

Your genetic and questionnaire data could also help researchers in projects, other than DecodeME, make discoveries about both ME/CFS and other diseases.

Having data on thousands of people means these scientists could quickly find answers and clues that would take them years to discover if they had to start recruitment from scratch.

DecodeME is offering data access to other approved researchers until the end of the study in August 2025 in the hope that it will help accelerate research towards possible diagnostic tests and treatments for ME/CFS .

Having piloted the process for data sharing with two projects, we are now fully ready to open the application process to researchers employed by reputable and bona fide institutions, who can demonstrate relevant experience and expertise.

All applications for data are 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 patient and public 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 only shared where participant consent has been given.

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


A message from our Patient and Public Involvement Steering Group:

“By allowing other high quality research teams to access the data collected through the DecodeME project, we can accelerate further research working to the aim of finding possible diagnostic tests and treatments for those with ME/CFS..

Sian Leary, DecodeME PPI Steering Group member

 

Quotes from the DecodeME data access pilot studies:

“There has been much speculation about the role of iciHHV-6 in ME. This will be the largest study to address this question and should provide definitive answers.”

Professor Ruth Jarrett, University of Glasgow

 

"Accessing and analysing DecodeME data will allow PrecisionLife to utilise a powerful new ability to generate clinically useful ME/CFS insights from patient datasets, which can lead to them being applied in a rapid and cost-efficient manner in healthcare settings. PrecisionLife hope to improve diagnosis and treatment of this challenging and costly disease, which has huge unmet medical need."

Steve Gardner, PhD, Chief Executive Officer, PrecisionLife

 

What’s next?

We have updated our website to include a section for Researchers who wish to apply for Data Access. This includes full details of the Data Access Process and can be found here.

If you are a DecodeME participant and wish to change your consent status, either to make your data available for data access, or to withdraw your consent, please contact the DecodeME project team at info@decodeme.org.uk. We will be happy to update your consent status for you.