ūüߨ Behind-the-scenes: what we’re doing [December 2021]

The DecodeME launch is just weeks away! We’re busy behind-the-scenes getting the world’s largest genetic study of ME/CFS ready for people like you to take part.

With over 28,000 people from all over the UK waiting for their invite, we’re working hard to make sure this large science study runs smoothly. Here are some of the tasks we’re working on:

Infographic - what we are working on behind the scenes. Testing the questionnaire. testing the DNA collection process. Ensuring your data is secure. Ready for you to take part

1. Testing the questionnaire process: 

The first stage of the DecodeME study is a questionnaire. We’re making sure our online questionnaire is straightforward to understand and complete. We’re also providing support and other ways to complete the questionnaire for people whose ME/CFS severely affects them and may find the online process challenging.

2. Testing the DNA collection process: 

If eligible for part two of the study, we‚Äôll post you a ‚Äėspit kit‚Äô. We will ask you to provide your saliva using this kit (so we can collect your DNA to study). This can be posted back to us from any¬†postbox for free. We‚Äôre testing the¬†kits to make sure they‚Äôre¬†simple to use and post.¬†We‚Äôre also checking that the saliva samples remain in good condition throughout their journey so DNA can be extracted from them.

3. Making sure your data is secure:

We’re getting everything set up so we can process the information we collect securely and efficiently. We’re making sure our systems are ready to handle a large amount of data from many thousands of participants. By carrying out rigorous testing now we’ll minimise the chances of technical hiccups, making the process as smooth and secure as possible.

Thank you for your patience and support while we make sure everything is ready for DecodeME’s launch. We’re excited to be completing these final steps, and we’re looking forward to inviting you to take part.

Recruitment launches in the new year in two stages, starting in January.
Register your interest in taking part or receiving updates now.