DecodeME: Applications for access to DecodeME data invited, opportunity closes end of Aug 2025

We have existing threads for general discussion of DecodeME, UK: DecodeME updates, was recruitment thread., and the first publication from the study, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

What I want to highlight with this thread is that the data access process is now open. Detail from an email that DecodeME has sent out:

"In addition to our core work, which seeks to identify DNA variants and genes that may influence a person’s chance of being diagnosed with ME/CFS, DecodeME has also built the world’s largest data set on ME/CFS as a managed access resource for future research projects.

Our ME/CFS data set includes both phenotype and genotype data from thousands of participants, who have consented to us sharing their data on a de-identified basis. In addition, where appropriate and where consent has been given, we can also re-contact participants.

By allowing other researchers to access this data, we hope to accelerate research towards possible diagnostic tests and treatments for ME/CFS and other diseases.

We are inviting applications, between now and the end of the study in August 2025, from researchers who are interested in accessing the DecodeME data, samples or cohort. Researchers from reputable and bona fide institutions can apply for data access, so long as they can demonstrate relevant experience and expertise. You can find out more about the application process here.

If you are not a researcher yourself, or this is not your field of interest or expertise, we would also welcome your help in spreading the word about the launch of our data access application process. So please forward this email on to any researchers you think may be interested. We believe that it is important to ensure that as many researchers as possible are aware of this opportunity to access a large and unique dataset.

You can also contact us at Project.DecodeME@ed.ac.uk if you have further questions or need support in making an application."

 

Great. Is there a blog article about this information that can more easily be shared with researchers? Many thanks in advance.

 

Might be worth submitting it to the Co-Cure list? I suspect the recipients of the daily digests are mainly patients, but some of them may have contacts with researchers and it may reach folk who're not members here.

Info can be sent to: CO-CURE@listserv.nodak.edu

 

Yes, https://www.decodeme.org.uk/data-access/