Researcher Access

To accelerate research towards possible diagnostic tests and treatments for ME/CFS, DecodeME has built the world’s largest data set on ME/CFS, as a managed access resource for future research projects.

Data access process image

We are open for applications

We’re now open to receive applications from bona fide researchers who would like to access the data and samples collected in DecodeME. 

  • Researchers may request access to genotyped data already collected, phenotype data, DNA and saliva samples.
  • Researchers can also request for participants to be re-contacted if further data or samples are required for their research studies. 

Initial GWAS results now available

DecodeME has identified eight genome-wide significant associations in people with ME/CFS, linked to the immune and nervous systems.

These results provide clear genetic targets for further investigation.  We invite researchers to explore and build on these results to accelerate progress towards effective treatments.

Read the preprint paper.

Access the summary GWAS statistics.

Please firstly read our DecodeME Data Access Policy, which outlines the whole application process.

To apply please then read and complete the Data and Materials Access Proposal Form and email it to us at DecodeME@ed.ac.uk


Our ME/CFS data set will include Phenotype and Genotype data from 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.


For details on how our data and samples were collected, please read our project protocol here.

Additional useful links:

DecodeME GWAS analysis plan

DecodeME first questionnaire and data dictionary


Researchers can also request for participants to be re-contacted if further data or samples are required for their research studies. Please consult the DecodeME data access policy for further details.


All applications for data access will be reviewed 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.

Read here for full details.


DecodeME will seek to get back to all applicants with a decision within 3-6 months.


DecodeME does not charge for data access.

However, costs for shipment of samples, temporary storage requirements, sample handling work, and any additional data transfer or processing costs will all be covered by the requester. These will be determined on a case-by-case basis, depending on the project requirements.


Please contact us at DecodeME@ed.ac.uk if you have further questions or need support in making your application.


 

Please consult the Data Access Policy and Application Form page to find out how to apply and submit the proposal form for review by the DecodeME Data Access Committee.

Data access policy and application form

 

If you are a participant in DecodeME, you can find participant we have more information on the Data Access Process on our FAQs page.

DecodeME FAQs 

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