If you missed this week’s research webinar about the KINECT-HD clinical study, it is now available on HDSA’s YouTube channel. Dr. Erin Furr Stimming and Dr. Daniel Claassen presented the details of this currently recruiting trial to test the drug valbenazine as a treatment for HD chorea. They covered study details, eligibility, locations, and how to get involved, and spent the majority of the time answering direct questions from the audience. Check out the webinar or head to www.hdtrialfinder.org or www.kinect-hd.org to learn more.
Upcoming HDSA & Me Webinar: Confidentiality and Electronic Medical Records
Many people in the HD community have questions about confidentiality around the HD genetic testing process, as well as other aspects of medical data privacy. To gain some clarity around this topic, join us on March 18th at 2 PM Eastern for a webinar about confidentiality and electronic medical records. This HDSA & Me Webinar will be presented by Stacey Barton, MSW, LCSW from the HDSA Center of Excellence at Washington University School of Medicine. Please register to participate!
This Week in HD History
We’ve known since 1993 that a specific genetic mutation causes Huntington’s disease, and we know now that a variety of additional genetic and environmental factors can also influence when symptoms are likely to begin for different at-risk individuals. This idea gained strong scientific support in March of 2004, when a consortium of researchers led by Dr. Nancy Wexler published a paper confirming that HD onset is unpredictable and depends on both genetics and lifestyle. The paper itself is pretty dense, but the takeaway is simple: HD is a family disease, and it’s not just about CAG repeats.
The researchers collected data and samples from thousands of willing participants living along the shores of Lake Maracaibo in Venezuela, a massive contribution of HD families that has fueled discoveries about HD for 25 years. It’s a testament to the great power of large scale observational studies (think Enroll-HD), which today hold the keys to speedier drug development.