This year HDSA was able to offer a new grant mechanism to foster novel clinical research studies within our Centers of Excellence Network. Applications for this grant mechanism were open to all 47 HDSA Centers of Excellence and their six partner sites. Grants of $12,500 were awarded to four research teams:
HDSA Center of Excellence Partner Site at Oregon Health & Science University, Dr. Amie Hiller
- Measuring Cortisol Levels in Persons with Huntington’s Disease
HDSA Center of Excellence at Rush University Medical Center, Dr. Deborah Hall
- Optimization of Tele-genetic Counseling for Huntington’s Disease
HDSA Center of Excellence at University of Texas Health Science Center, Dr. Erin Furr-Stimming
- Melatonin for HD Gene Carriers with HD Related Sleep Disturbance
HDSA Center of Excellence at the University of Virginia, Dr. MadalineHarrison
- Training in Primary Palliative Care for Huntington’s Disease
Check out (and share!) the official press release with more info and statements from our Chief Scientific Officer and Chief Executive Officer.
University of Iowa researcher gets renewed grant to study JHD
Dr. Peg Nopoulos is the director of HDSA’s Center of Excellence at the University of Iowa. For many years she has focused her research efforts on better understanding Juvenile Huntington’s Disease as well as children and young adults at risk. She recently received a huge grant of $18 million from the National Institutes of Health to continue this important work. The more we understand about the brains of young people in HD families, the closer we can get to treatments that prevent rather than treat HD symptoms. This is especially significant as genetic therapies become a reality.
Stay tuned for more info about this topic – Dr. Nopoulos will be presenting her work and her plans for this funding at an HDSA webinar this February.
Genentech Releases New Informational Site About Huntington’s Disease
Roche Pharmaceuticals, known as Genentech within the United States, is conducting a Phase 3 clinical trial of a huntingtin-lowering drug called RG6042. Genentech has recently created a new informational site about Huntington’s disease, called “Huntington’s together.” It addresses understanding, living with, caring for, and treating HD. Explore the new pages here.
HDSA Center of Excellence at Northwestern Telehealth Study Highlighted
HDSA Human Biology Fellow Dr. Danielle Larson and her mentor Dr. Danny Bega of the HDSA Center of Excellence at Northwestern University were highlighted on mHealth Intelligence this week. They are conducting a study on “telehealth” visits, to better understand whether an online appointment with a neurologist could potentially replace an in-person visit for patients and families who are unable to travel to see an HD expert. HDSA is actively working on expanding the use of technology to support HD families and healthcare professionals. If the promising therapies in development become a reality, this may necessitate more genetic testing and other types of medical support.