One of the key questions we receive is “how exactly will the Registry advance ME/CFS research?” Perhaps the easiest way to explain the immense potential of the Registry is by highlighting a similar resource established for the Parkinson’s community. Launched in 2015, Fox Insight, a Michael J. Fox Foundation for Parkinson’s Research initiative, is a registry much like You + ME in which people with Parkinson’s disease share health information to help researchers identify treatments and cures.
Their community currently stands at 48,000 strong. More than 400 researchers are registered to access the Fox Insight dataset, resulting in 12 publications. Research informed by the data led to two FDA-approved therapies and an additional 35 potential therapies are advancing through clinical trials.
The same is possible for ME/CFS.
We are already on track to exceed the Fox Insight enrollment numbers but we have some enrollment gaps that you can help us fill:
• We’d like to include more individuals who were infected by COVID-19 with or without long term effects.
• Consistent with historical enrollment of people with ME/CFS in research, the current composition of the Registry is largely white and does not reflect the diversity of our community. We will be making a directed effort to increase Registry inclusivity and participation from members of underrepresented communities.
• We need to boost the number of control volunteers in the Registry. Based on other registries, 30% of our total cohort numbers should be controls. It currently stands at around 10%, so we have work to do. Of course, we also want to continue to grow the number of participants with ME/CFS overall. So if you haven’t yet, please consider signing up today at youandmeregistry.com.
Thanks for all you do to make the Registry a success. None of this would be possible without you.