Summary
- Supporting HD families through the ups and downs of clinical trials
- HDSA Announces Launch of HD Data Collection Initiative in partnership with RARE-X
- This Week in Research History: International Clinical Trials Day
Supporting HD families through the ups and downs of clinical trials
Clinical trials are critical for getting us closer to treatments and cures for HD, but clinical research can be tumultuous. Trial closures, safety pauses, and other challenges can bring throws of uncertainty for trial participants and the HD community at large. HDSA conducted a series of interviews with members of HD-COPE, a group of global advocates made up of HD community members led by HDSA and the Huntington’s Society of Canada (HSC), to learn more about what the community needs to be better supported through the ups and downs of clinical research. The findings were recently published in the Journal of Huntington’s Disease—read the full article here.
HDSA Announces Launch of HD Data Collection Initiative in partnership with RARE-X
Yesterday, HDSA announced they will launch the HD Data Collection Initiative in collaboration with RARE-X, the patient driven data collection platform of rare disease advocacy organization Global Genes. The goal of this project is to engage individuals with HD and their care partners to build a high-quality HD natural history study that can be used to accelerate HD research. To learn more, read the press release and community letter published on HDSA.org. If you are interested in learning more about how you can get involved as an HD community member, email HDVoices@hdsa.org.
This Week in Research History: International Clinical Trials Day
May 20th is recognized as Clinical Trials Day to commemorate what is regarded as the first randomized clinical trial initiated by James Lind on May 20, 1747. In this momentous study, Lind analyzed possible treatments of scurvy in shipmates aboard the HMS Salisbury of the British Royal Navy.
As we commemorate 276 years of clinical trials and the vast advances in medical treatment and science that have been brought about from them, HDSA extends its gratitude to clinical researchers, healthy volunteers, and trial participants who allow us to press on in the search for novel therapies and cures for Huntington’s Disease. To learn more about how you can get involved in HD research visit HDSA’s website and HDTrialfinder.org.
