By Daniel Claassen, MD
I hope I am not premature in this statement, but it seems like we are coming to the light is at the end of the COVID-tunnel. I am looking forward to seeing you all again, in person, one of these days. For me, one of the many ‘COVID-blessings’ has been the uninterrupted opportunity to work with my team, and the HSG, on clinical trial and study recruitment. The HSG has been tireless in getting studies to recruitment goals — KINECT-HD and PROOF-HD to name a few. I have been privileged to see much of the inner workings, as a co-PI on KINECT-HD, and I can’t emphasize how much work goes into the coordination, recruitment, and retention of these studies.
In this edition, we take aim at the contemporary issues regarding recruitment and retention. I think most of us have been made aware of the many challenges with recruiting diverse populations, and the ramifications of these decisions (see some of the work on Aducnamab if you haven’t read that yet). As coordinators, site investigators, and members of the HD community, we have a responsibility to make sure we make trials accessible to a diverse community. Sometimes, this requires us to get outside our comfort zones, and think about ways to engage those in our community that may not have easy access to academic centers or specialty care.
This issue tackles these topics head on. Kevin Gregory writes a great piece on contemporary issues in recruitment. Four panelists offer trial recruitment insights from diverse perches, and Anna Pfalzer reflects on how to make retention part of everyday clinical trials. We highlight myHD Story and HD Net, two new projects of the HSG. Take a peek into Katie Jackson’s life, as she courageously raises at-risk children. Finally, soak in the news in basic research and the updates in clinical trial status from PTC Therapeutics and uniQure.
Wow. So much going on. I hope you enjoy this edition, and see you soon.
Dr. Claassen is Associate Professor of Neurology at Vanderbilt University, and Chief Editor of HD Insights.