Our Accomplishments

Our Accomplishments

The Huntington Study Group (HSG) has conducted more than 30 clinical trials and studies since its founding in 1993. HSG developed the Unified Huntington’s Disease Rating Scale (UHDRS), an invaluable research tool that provides a uniform assessment of the clinical features and course of HD. More recently, HSG conducted trials that led to the first, and to-date, only, FDA-approved drug (tetrabenazine) for the treatment of HD.

Our collaborators and sponsors number in the dozens and include major pharmaceutical companies, foundations, CROs and academic institutions. HSG is highly regarded as a facilitator of Huntington Disease (HD) clinical trials and studies because of its high standards for its research sites (more than 100), investigators and coordinators (more than 400) and its large, international network of researchers dedicated to finding treatments that make a difference for HD.

  • Founded in 1993, as an organization within the University of Rochester and became a stand-alone 501(c)(3) non-profit in 2012
  • Developed the Unified Huntington’s Disease Rating Scale (UHDRS)
  • Conducted 30+ clinical trials and studies including
    • At-risk, prodromal and manifest HD participants
    • 10,000+ participants; 50,000+ participant years
  • First, and to-date, only, FDA-approved drug for treatment of HD (tetrabenazine)
  • Access to largest HD clinical trial database in the world

2015 Key Accomplishments

  • New drug under review by the FDA. If approved, it will be the second for the treatment of HD.
  • Launched new trial with a novel compound
  • Record-breaking annual meeting — for attendance and sponsorship
  • Implemented new initiatives to grow the number of HD health care providers
  • Launched new website, social media
  • More than 90% of HSG’s funding goes directly to seeking treatments that make a difference for HD. (<10% administrative costs)