Given the possible importance of the DecodeME data I have opened this thread for users that might have ideas for possible projects with this data. I can’t claim to know what projects would even be possible or sensible, especially since I had never heard of PrecisionLife of iciHHV-6 before the respective projects were launched, but perhaps some people have some ideas that hadn’t been expressed on the main DecodeME thread yet. For many projects it might only make sense to launch them once first results of DecodeME are known. However, making other researchers aware that this data is and will be available could be an important step to accelerate things. I will be contacting the team surrounding Hannah M Ollila to see whether they think an interesting project would be possible in relation to what they had previously done (see discussions here, here and here) as they have expressed their interest in POTS, ME/CFS and LC.
looking into family genetics where this is a thing would be good - however I don't know if the data has been gathered in such a way that this is a possibility in future ? @Andy
From the transcript of the most recent DecodeME webinar, https://www.decodeme.org.uk/webinar-recording-and-transcript-march-2024/ "we are collaborating with Hanna Ollila and Anniina Tervi from FinnGen, in Finland, who already are analysing ME data from electronic health records from different sources. From Finland, we are collaborating with FinnGen, and from the USA, we are looking to collaborate with the Mass General Bridgham Biobank, and also the Estonian Biobank."
From the DecodeME FAQ, https://www.decodeme.org.uk/faqs/are-you-looking-for-a-family-genetic-link/ "There is evidence of a genetic link in ME/CFS and people with close family members who all have the disease. We aren’t looking into specific family groups in this study, although our analysis may be able to identify some hereditary aspects. Hopefully, we can uncover genetic causes of the disease which will explain the occurrence of close family members who all have ME/CFS."
Seems like a sensible extension project to me. Since 95% of participants consented to being recontacted for new research projects it might be sensible to discuss possible projects for which possibly additional data might have to be collected.
