16 Pageviews Read Stories
- EIN 45-5557987
- (585) 319-3591
- 95 Allens Creek Rd Ste 132 # Bdg1 Rochester NY 14618-3255 USA
- www.huntington-study-group.org
- Add to Favorites
Nonprofit Overview
Causes: Birth Defects & Genetic Diseases, Health
Mission: The huntington study group (hsg) is dedicated to the mission: to seek treatments that make a difference to those affected by huntington disease. Description continued on schedule o. Specifically, the hsg focuses on the conception, conduct, analyses, scientific reporting, and communication of clinical research, including treatment and observational trials, aimed at relieving the burdens and slowing the progression of hd. The hsg 1) identifies and prioritizes initiatives that can have an impact on patient care; 2) advances knowledge about the cause, disease progression and treatment of hd and related disorders; and 3) collaborates with government, foundations, industry, and the hd community to effectively plan, execute and disseminate research and new knowledge related to hd.
Programs: The hsg is a network of clinicians, research investigators, scientists and huntington disease (hd) experts, largely from academic/research institutions worldwide working together with a variety of sponsors (government, industry, foundation) to develop treatments that make a difference for hd patients and families. We partner with hd care and advocacy groups in order to fulfill our mission most effectively. Description continued on schedule o. The hsg has carried out cooperative therapeutic research since 1993, beginning with the development of the unified huntington's disease rating scale (uhdrs) and longitudinal database. The hsg, through a clinical trial, brought the first and to date only fda-approved hd treatment (tetrabenazine) to market. We continue to serve our constituents through clinical research studies. The hsg has partnered with pharmaceutical companies, private foundations, the national institutes of health (nih), and the fda orphan drug products divisions in developing and conducting trials and observational studies. The hsg is committed to 1) advance knowledge about the cause, disease progression and treatment of hd and related disorders; 2) development, access to, and maintenance of study databases; 3) full disclosure of research results in scientific journals after independent expert review; 4) protection against conflict of interest; 5) uniform contracting and sub-contracting across all research sites; and 6) democratic governance of its organizations and activities.