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HD InsightsIn Brief: Huntington Study Group Vision Statement

HSG Vision Statement


On May 12, 2022, Sandra Kostyk (The Ohio State University) and Samuel Frank (Beth Israel Deaconess Medical Center) were elected to serve as Co-Chairs of the Executive Membership Committee (EMC) of the Huntington Study Group (HSG). We are pleased to now officially welcome Sandra and Samuel into their
new role as of July 1, 2022.

This is an exciting and evolving time for the organization. While the Huntington Study Group launched a wholly owned for-profit entity in HSG Clinical Research, Inc. (HSGCR), dedicated exclusively to clinical research operations, the HSG will continue to rely on our membership to drive its mission-driven focus. That mission includes providing premier educational content in Huntington’s disease (CME4HD™), ongoing training for Huntington Study Group members (HSG MemberEd), credentialing researchers for clinical trials, and leading innovations in HD research through efforts like the HSG’s observational study to test the reliability of virtual administration of the Unified Huntington’s Disease Rating Scale titled, “vUHDRS.”

“In their role as Co-Chairs of the HSG Executive Membership Committee (EMC), Sandra and Sam will spearhead initiatives to further enhance our core mission to seek treatments that make a difference in the lives of people affected by HD,” said Shari Kinel, CEO of the Huntington Study Group. “We look forward to their collaborative leadership with our members and staff to ensure the HSG continues to make a difference for the entire HD community.”

The new HSG EMC Co-Chairs began their term with an orientation to the overall governance structure of the organization, working toward nominating candidates for open EMC positions and filling open HSG subcommittee positions.

“We wanted to be part of the HSG as it takes on an expanding role in the clinical research community with our industry and foundation partners,” said Dr. Frank. “In the short term, there is so much to be done to re-organize HSG and we are thrilled to help shape our group. We are excited to continue developing new initiatives in education, clinical care and clinical research, while re-engaging the research community as we emerge from the isolation of the pandemic. myHDstory™ and vUHDRS® are two HSG-led projects that may have tremendous impact on our field and may help get treatments to market faster, with a lower barrier to entry for research.”

HSG Innovations in Research and Care, Transforming Outcomes:

HSG’s Accomplishments Impacting Research & Clinical Outcomes

  • Developed and own UHDRS – Gold standard primary endpoint
  • 1st direct-to-patient online research for individuals diagnosed with HD
  • 1st HD clinical trial
  • 1st HD clinical trial to utilize wearable sensors
  • 1st virtual visit conducted in a HD trial
  • 1st HD IV infusion trial

HSGs Premier Learning Center for Researchers & Healthcare Providers

  • 1st accreditation program for clinicians in management of HD care
  • 1st and largest annual gathering of clinical researchers and experts in HD
  • 1st and largest network of trial ready sites specializing in HD

About HD Insights

Our mission is to promote, disseminate, and facilitate research on Huntington’s disease. To fulfill this mission, we are guided by an outstanding editorial board that includes representatives from three continents, academia, industry, and the HD community.