Huntington's Disease Society of America (HDSA) Center of Excellence at the Neurological Institute of New York

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 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 and occupational 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:

• 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 Jasim Uddin at (212) 305-4597 or via email at ju2189@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

Deborah Thorne, LCSW – Social Worker, Director of Clinical Care

Sarah A. O'Shea, MD – Attending Neurologist

Jill Goldman, MS, MPhil, CGC – Genetic Counselor

Ashwini Rao, EdD, OTR – Occupational Therapy

Lori Quinn, EdD, PT – Physical Therapy

Jasim Uddin – Clinical and Research Coordinator

Miles DeGrazia – Research Assistant

Vanessa Torres– Research Assistant

Rumsha Javed – Research Assistant