Huntington Study Group and HD Genetics Collaborate to Better Serve HD Gene Positive Patients

Rochester, NY – September 5, 2024 – The Huntington Study Group® and HSG Clinical Research, Inc. (together, “HSG”) are pleased to announce a strategic partnership with HD Genetics to assist patients who have tested positive for Huntington’s disease (HD) learn about and enroll in research studies.

There remains a crucial need to develop additional therapies and ultimately discover a cure for this devastating genetic disorder. The collaboration between HSG and HD Genetics aims to support this need by helping patients who have tested positive for the disease in finding and enrolling in clinical and observational studies.

Anne Van Dusen, COO of HSG, said, “Huntington’s disease research relies on the active participation of individuals impacted by the condition. By taking part in research, participants not only contribute to the advancement of scientific knowledge but also play a crucial role in shaping the development of future treatments. By working with HD Genetics, we can reach potential participants who are not currently seen by our network of research sites, or who have opted not to go to a research site for genetic testing, thereby further enabling people to overcome obstacles and find ways to participate in research.”

Through this collaboration, HD Genetics may connect interested HD gene-positive patients to the Huntington Study Group, which will serve as a resource to help each person navigate and learn about research opportunities that may be a good fit for their specific diagnosis and needs. 

“Our passion at HD Genetics goes well beyond genetic counseling and testing. We want to help accelerate clinical study recruitment and HSG is the perfect partner that aligns with our ambitions to educate the HD community about study opportunities they may not be aware of,” said BJ Viau, founder of HD Genetics.

About Huntington Study Group
The Huntington Study Group^®, a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., are world leaders in designing and conducting clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG conducted all three pivotal clinical trials that led to the only FDA-approved medications for Huntington’s disease associated chorea. The organization is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.

About HD Genetics
Huntington’s Disease Genetics (HD Genetics) is a healthcare company specifically offering a best-in-class genetic testing & counseling experience to individuals who are at-risk for Huntington’s disease to empower each person throughout their HD journey. To learn more, visit https://hdgenetics.com/.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent.  Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

To read the full press release, visit https://www.pr.com/press-release/919586.

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For media inquiries, please contact:
Emma Berkner
Manager of Creative Services and Communications
Huntington Study Group
info@hsglimited.org