DeCode ME questionnaire deadline announced- 15th November 2023

DeCodeMe has announced that they will be closing their project’s registration portal to both new participants and also to those who have signed up but not returned their questionnaire at 5pm Wednesday 15th November 2023.

DeCodeME is the largest ever ME/CFS study to examine whether the disease is partly genetic and, if so, to help pinpoint what causes it. The study will help researchers understand ME/CFS and, ultimately, assist finding treatments. Since its launch, DeCodeME has recruited almost 25,000 people to complete a questionnaire, and almost 20,000 participants have been invited to provide a DNA sample via a home ‘spit test’ kit.

However, more participants are still required, and time is running out to be part of this ground-breaking study which is open to all 16 or older, who live in the UK and who have a diagnosis of ME/CFS.

Timeline :

  • 15th November 2023 to register and complete the questionnaire.
  • 15th November 2023 for those who were invited to supply a DNA sample but have not received their home kit to request a replacement.
  • 31st January 2024 deadline for return to DecodeME of the DNA spit collection kit which will be issued to those selected to partcipate in this part of the research.

There are over 4,000 spit kits which have been sent out and not yet returned and so DeCodeME urges they are returned as soon as possible. Details on returning the sample, may be found on the project’s FAQ page . Should you have been waiting more than three weeks for your kit, since receiving an invite to take part in the DNA stage, then please contact the DecodeME team, email team or on 0808 196 8664, and they will investigate and order a replacement kit, if required. The final deadline for requesting replacement kits is 15 November 2023.

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