On July 25, 2012, the first participant entered ENROLL-HD, the world’s largest observational study of Huntington’s disease that monitors how the disease happens in people and how it changes over time. That first participant was in Tennessee, and 10 years later, over 21,000 participants from 155 clinical sites in 23 countries across the globe have contributed to the study. More than 88,000 clinic visits have provided over 61 million data points that have supported more than 42 HD research studies to date—and the numbers are only growing!
Enroll-HD is open to anyone who has HD or is at risk, and is a resource for the entire HD community, including patients, families, researchers, healthcare professionals, patient advocates, and anyone else connected with HD. Researchers can use this huge data and bio sample collection to learn more and come up with new ways to effectively treat HD. Thank you to the many participants, clinicians, and researchers who have been a part of this amazing study. To learn more about ENROLL-HD and how to get involved, click here, or visit HDTrialfinder.org.
How is balance affected by HD? Researchers need your help to find out
Researchers at the HDSA Center of Excellence at University of Washington are studying how balance is impacted by Huntington’s disease, and how changes in balance over the course of the disease may affect daily living. Participants will be outfitted with wearable sensors and asked to complete balance and walking tasks at an in-person visit and at home in the week following. The results of this study may inform future physical therapy interventions for people with HD. The study is seeking participants 18 years and older who have HD and control participants without the disease. To learn more, visit HD Trialfinder or view the study flyer here.
King’s Crusade: HDSA features HD Advocate, Donald A. King
In 2005, HDSA established the Donald A. King Summer Research Fellowship program in honor of Donald King, a tireless advocate for HD families and HDSA’s Chairman of the Board of Trustees from 1999 to 2003 who passed suddenly in 2004. The purpose of this fellowship program is two-fold: first, to attract the brightest young scientists into HD research and second, to facilitate meaningful HD research to clarify the biological mechanisms underlying HD pathology. To celebrate Don’s legacy, HDSA has produced a two-part story directed and edited by Rae Maxwell. To learn more about Don’s work, and to hear from his daughter as well as former Don King Fellow Kiryung Kim about how her experience shaped her personal and professional trajectory, watch part one of the story here, and stay tuned for part two next month.
