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

Enroll-HD is a longitudinal, observational, multinational study whose goal is to develop a comprehensive repository of prospective and systematically collected clinical research data (demography, clinical features, family history, genetic characteristics) and biological specimens (blood) from individuals with manifest HD, unaffected individuals known to carry the HD mutation or at risk of carrying the HD mutation, and control research participants (e.g., spouses, siblings or offspring of HD mutation carriers known not to carry the HD mutation). More than 20,000 participants have now enrolled in the study for annual assessments. Click here to learn more. 

PI: Karen Marder. Call Alana Maldonado 212-305-8873

Individuals with Huntington's disease (HD) have balance impairments that put them at risk for falls, however there are no standardized outcome measures of balance that are specific to HD. Outcome measures are vital to understanding the nature of balance impairments as well as to evaluate improvement in balance following interventions, including medication or rehabilitation. The purpose of this study is to administer a battery of balance outcome measures that have been used in people with neurodegenerative diseases to determine which items are appropriate for people with HD. This study requires 1 in person assessment (with a second optional in person assessment one week later). The study time takes 2 hours each session, and participants will undergo some patient-reported assessments as well as testing of balance and walking. This study will take place at Teachers College, Columbia University at 525 W 120th St. CUMC IRB: AAAU1786.

For information, contact Chelsea Macpherson, PT, DPT, NCS at 212-678-3916 or neurorehablab@tc.columbia.edu