CHDI
Huntington Study Group and CHDI Foundation collaborate on Enroll-HD
Rochester and New York City, New York, July 25, 2023 – HSG Clinical Research, Inc.—the Huntington Study Group’s clinical research organization (CRO) and wholly owned subsidiary (collectively referred to here as HSG)—has begun providing CRO services for CHDI Foundation’s Enroll-HD observational study and clinical research platform in the USA and Canada.
“CHDI has long supported and worked with the HSG as a clinical investigator-facing network of healthcare professionals dedicated to Huntington’s disease,” said Robi Blumenstein, President of CHDI Management. “HSG is very familiar with the HD clinical sites throughout North America and, with the establishment of its clinical research arm, HSG Clinical Research, it was only natural that we would turn to HSG as a CRO for Enroll-HD. HSG brings exceptional domain knowledge and continuity to Enroll-HD and the studies and trials it supports, and we look forward to the continued expansion of this relationship over time.”
Enroll-HD is a clinical research platform and the world’s largest observational study for Huntington’s disease families that serves as a resource for the entire HD community, including families, clinicians, researchers, advocates, and the vitally important engagement of pharma and biotech companies developing novel therapeutics. Currently, the Enroll-HD clinical database comprises more than 30,000 participants from around the world at more than 155 clinical sites in 23 nations.
CHDI and HSG will leverage their expertise and innovation to continue gaining knowledge and insight into the natural history of HD, combine their strengths in research, clinical expertise, and study execution to ensure the ongoing success of Enroll-HD, and work together to accelerate therapeutic development to make a difference for those affected by Huntington’s disease.
Shari Kinel, CEO of Huntington Study Group, noted, “CHDI is an incredible organization and HSG could not be more excited to work with them on this important study. Our organizations have a shared commitment to improving the lives of individuals and families affected by HD, and we are confident that our joint efforts will lead to meaningful outcomes. We are already looking forward to future collaboration opportunities.”
Learn more about Enroll-HD, including how to participate and how it can help your research.
If you’re interested in learning more about opportunities to collaborate with HSG, please contact
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.
About Huntington Study Group / HSG Clinical Research, Inc.
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts 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 has conducted 40 studies in Huntington’s disease, including the pivotal trials for the only two FDA-approved drugs, over their 30-year tenure. HSG 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 CHDI Foundation
CHDI Foundation is a privately-funded, nonprofit biomedical research organization devoted to a single disease – Huntington’s disease. Our mission is to collaboratively develop therapeutics that will substantially improve the lives of those affected by Huntington’s disease. To achieve this CHDI manages a diverse portfolio of research projects through a novel virtual model that encourages scientific collaboration to more directly connect innovative research, drug discovery, and clinical development. This helps bridge the translational gap that often exists between academic and industrial research pursuits, and which adds costly delays to therapeutic development. Our activities extend from exploratory biology to the identification and validation of therapeutic targets, and from drug discovery and development to clinical studies and trials. To learn more, visit www.chdifoundation.org.