Summary
- HDBuzz Covers Latest Update from Novartis
- STAT News on Understanding HD and the Search for Solutions
- TODAY: Ask the Scientists Anything Webinar
- Compensated Research Survey Opportunity Through Rare Patient Voice
HDBuzz Covers Latest Update from Novartis
Last week, Novartis shared that they will end development of branaplam for HD. Dosing of branaplam in the Phase 2b VIBRANT-HD study was initially suspended in August of this year due to safety concerns identified by the study’s independent Data Monitoring Committee. This group ultimately concluded that the side effects of peripheral neuropathy (nerve damage leading to pain, numbness, and changes in reflexes) were significant enough to end development of the drug completely. While the causes for the symptoms observed are still unclear, HD Buzz gave us the breakdown of what we know about the study results so far in anticipation of future updates from Novartis. To read the full article, click here.
STAT News on Understanding HD and the Search for Solutions
Nearly 30 years after the HD gene was discovered and located in a collaboration between proclaimed scientists and selfless HD family members in Iowa and Venezuela, the HD community still awaits treatments and cures to combat its effects. A recent article from STAT News chronicles how our understanding of the HD gene has evolved since its initial discovery, and how therapeutic strategies have followed suit. To read this detailed examination of the past, present, and future of HD science, click here.
TODAY: Ask the Scientists Anything Webinar
At 1PM ET today, Thursday December 15th, HDSA will be joined by expert HD scientists and HD Buzz editors, Drs. Jeff Carroll and Rachel Harding, to answer your questions about HD research, reflect on another eventful year of HD science, and celebrate all we have to look forward to in 2023. Register to join HDSA’s last research webinar of the year by clicking here.
Compensated Research Survey Opportunity Through Rare Patient Voice
Rare Patient Voice connects patients and caregivers with the opportunity to voice their opinions through paid surveys and interviews to improve medical products and services. There is a current research opportunity for Huntington’s Disease patients and caregivers living within the United States. This is a 30-minute online survey, and the compensation is $50.
To participate, you will need to follow this link to sign up with Rare Patient Voice: https://rarepatientvoice.com/hdsa/. Then you will receive an email invite to a screening survey to see if you qualify. You may also receive emails in the future about other opportunities to participate.
