New York, NY (December 23, 2019) – The Huntington’s Disease Society of America (HDSA) has awarded four grants under a new research initiative, the HDSA Center of Excellence Clinical Research Pilot Program. These grants, totaling $50,000, represent HDSA’s patient-centric research focus by fostering novel clinical research projects within the HDSA Center of Excellence network.
The HDSA Centers of Excellence provide an elite team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.
These pilot projects will unite scientists with patients through the direct participation of HD families in clinical research. The funding provides an opportunity for HDSA Center of Excellence directors and staff to get a new research ideas off the ground.
“I am genuinely excited about this year’s recipients because their innovative proposals could positively impact the way HD care and counseling are delivered, how symptoms are treated and how disease progression is monitored,” said George Yohrling, PhD, Chief Scientific Officer and Chief Mission Officer at HDSA.
Applications for this grant mechanism were open to all 47 HDSA Centers of Excellence and their six partner sites. Ultimately, grants 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. Madaline Harrison
Training in Primary Palliative Care for Huntington’s Disease
“Our HDSA Centers of Excellence are at the epicenter in the search for better HD care and treatments. HDSA is pleased to support these pilot programs in the hope that our investment today will provide a brighter future for all HD families.” said Louise Vetter, HDSA’s President & Chief Executive Officer.
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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.
Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call (800) 345-HDSA.
