and Movement Disorders
234 Goodman Street, Cincinnati, Ohio 45219 | (866) 941-UCNI (8264)
234 Goodman Street, Cincinnati, Ohio 45219 | (866) 941-UCNI (8264)
COHORT is a coordinated research effort by Huntington Study Group research centers worldwide to prospectively collect data from consenting individuals who are affected by HD and who are part of an HD family. The systematically accrued data from annual prospective assessments will relate phenotypes between families with genetic and environmental factors. The knowledge from these relationships will better inform us about the onset and progression of HD, help identify potential interventions for HD, and aid in planning research studies of experimental treatments aimed at slowing or postponing the onset of HD. The collection of biological samples will further provide research material and correlative data for scientists to identify biomarkers that parallel the development and progression of HD. Identification of biomarkers will in turn contribute to our understanding of HD and enhance the efficiency and power of disease-modifying therapeutic trials.
For those ≥18 years of age, there are 4 different types of individuals who may be eligible: 1) An individual with clinically diagnosed features of HD in the setting of a confirmatory family history or an individual known to carry the HD gene as confirmed by DNA testing (individual is defined as the ‘proband’). 2) A first-degree relative (parents, siblings, or children) of an individual with clinically diagnosed features of HD in the setting of a confirmatory family history or of an individual known to carry the HD gene as confirmed by DNA testing. 3) A grandparent or grandchild of an individual participating in COHORT who meets criterion 1. 4) A HD family member who has no risk for HD due to no family history (spouses of proband only) or negative gene testing. This individual must have an affected or gene positive spouse or family member participating in COHORT to be included.
For more information, please contact Mary Beth Bialick, at (859) 409-1810 or (513) 741-4372.