Huntington's Disease Center

Submitted by admin on Wed, 08/30/2017 - 14:55

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

website

 

Columbia University's HDSA Center of Excellence offers comprehensive services for individuals affected by Huntington's Disease 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 testing and counseling 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. Ancillary services offered include two monthly support groups.

We actively participate in the Huntington Study Group (HSG), a national consortium of HD Centers. Clinical trials currently offered are PHEND-HD, a study testing the safety and tolerability of phenylbutyrate, and TREND-HD, a study testing the efficacy of ethyl-EPA, which in prior clinical studies reduced the severity of choreic movements.

We anticipate additional clinical trials of putative neuroprotective agents such as the health food supplements creatine (CREST-UP) and Co-enzyme Q-10 (2CARE), and the antibiotic, minocycline (DOMINO).

We also participate in three Huntington Study Group observational studies: PHAROS for those at risk who do not know their gene status, PREDICT for those who know they carry the HD gene and COHORT (proposed to enroll entire families in late Fall 2005).

Three investigator-initiated observational studies are also sponsored by our Center. These are PHAIMOS, a study designed to identify the earliest motor manifestations of HD, GAIT RITE, a study that aims to define factors that contribute to gait impairment and the fMRI study which is looking for early changes in brain function in HD.

Main Contact information

Deborah Thorne, LCSW (212) 305-9172 or via email at thorned@ghsc.cpmc.columbia.edu

Mailing Address:

Columbia University
630 West 168th Street
P & S Box 16
New York, NY 10032

Attn: Deborah Thorne, LCSW

Location

Clinic Address (office hours by appointment only):

New York State Psychiatric Institute
1051 Riverside Drive
New York, NY 10032

Staff

Karen Marder MD MPHDirector
Deborah Thorne LCSW - Social Worker and Clinic Coordinator

Neurology:

Elan Louis MD MS
Steven Frucht MD
Carol Moskowitz MS, APRN-C, CNRN
Pietro Mazzoni MD PhD

Multi-disciplinary Services:

Mark Groves MD - Attending Psychiatrist
Jennifer Williamson MS - Genetic Counselor
Jeanne Thomson CCC-SLP - Speech/Language Pathologist
Lisa Muratori EdM, EdD - Physical Therapy
Ashwini Rao EdD OTR – Occupational Therapy
Ann Gaba RD EdD - Registered Dietitian
Paula Wasserman MA – Assistant Clinic Coordinator/Intake Services
Ronda Clouse RN – Research Nurse
Diana Ruiz - Research - Assistant/Spanish translator
Rafael Santiago - Administrative Assistant

Eligibility

Please view our website for further details regarding clinical medication trials. If you have any additional questions, please contact Carol Moskowitz at (212) 305-5779 or via email at cbm4@columbia.edu. To participate in one of our many observational studies, please contact Paula Wasserman at (212) 305-4597 or via email at pleber@ghsc.cpmc.columbia.edu.

Referrals

For new patient referrals and appointments, please contact Paula Wasserman at (212) 305-4597 or via email at pleber@ghsc.cpmc.columbia.edu