Huntington's Disease Center

Columbia Health Sciences Huntington's Disease Society of America (HDSA) Center of Excellence at the New York State Psychiatric Institute

Columbia University's HDSA Center of Excellence offers comprehensive services for individuals affected by Huntington's Disease (HD) and their families. We provide direct patient care free of charge as well as opportunities to participate in research to better understand and treat HD.

Our specialized multidisciplinary team of health professionals provides the highest level of clinical care for HD patients and their families. In addition to neurological, and psychiatric diagnosis and treatment, we offer social services, and a genetic counseling and testing program. Physical, occupational and speech therapy are offered on-site. The Center operates on Fridays from 8:00 AM to 1:00 PM, by appointment only. We actively participate in the Huntington Study Group (HSG), a national consortium of HD Centers. We are currently recruiting for the following studies:

• STAIR – (clinicaltrials.gov identifier NCT02507284) This study evaluates the tolerability, safety and activity of SRX246 in the treatment of irritability in patients with Huntington’s disease.
• LEGATO – (clinicaltrials.gov identifier NCT02215616) This study is designed to find out whether a drug called laquinimod is safe, and whether it is effective in helping patients with Huntington’s disease after 12 months of treatment.
• ENROLL – (clinicaltrials.gov identifier NCT01574053) ENROLL-HD is a longitudinal, observational, multinational study that will integrate two existing Huntington's Disease (HD) registries, REGISTRY in Europe and COHORT in North America and Australia, while also expanding to include sites in Latin America and Asia. With no end date and annual assessments, the goal of Enroll-HD is to build a large and rich database of longitudinal clinical information and biospecimens. This database will serve as a basis for future studies aimed at developing tools and biomarkers for progression and prognosis, identifying clinically relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies.

Research

For more information about participating in research, please contact Paula Wasserman, MA, CRC at (212) 305-4597 or via email at pl2032@cumc.columbia.edu.

HD Clinic

For new referrals and appointments, please contact Deborah Thorne, LCSW at (212) 305-9172 or via email at dzt1@cumc.columbia.edu.

Staff

Karen Marder MD MPH – Director, Senior Attending Neurologist

Deborah Thorne LCSW – Social Worker, Director of Clinical Care

Hiral Shah, MD – Attending Neurologist

Edward Huey MD – Attending Psychiatrist

Jill Goldman, MS, MPhil, CGC – Genetic Counselor

Ashwini Rao EdD OTR – Occupational Therapy

Lori Quinn EdD PT – Physical Therapy

Jeanne Thomson CCC-SLP – Speech/Language Pathologist

Paula Wasserman MA, CCRC – Clinic and Research Coordinator

Ronda Clouse RN – Clinical Research Coordinator