|Age:||18 and older|
|Keywords:||Huntington's, huntington's disease|
This study is called: Enroll-HD. It is a continuation of the COHORT study (Cooperative Huntington Observational Research Trial). It is an ongoing longitudinal study. That means we will ask you to undergo the research procedures about once a year for as long as you are willing to participate.
Enroll-HD has several parts, five of which are core parts of the research study and others which are optional. If you consent to participate in Enroll-HD we will: 1. Assign/confirm a 9-digit unique identifier (HDID) 2. Conduct a clinical evaluation of your current medical status and wellbeing. 3. Collect a sample of your blood to study your DNA. 4. If you participated in the COHORT study, include any data and samples collected from you in that study in the database along with the data from the Enroll-HD study. 5. Store the data and biological materials we collect from you (including any data and samples from COHORT) in a secure place and make them available for future research.
For the optional parts, we will also: 1. Collect information about your family history. 2. Collect other biological samples from you. 3. Link clinical information about you collected in research studies other than COHORT to the clinical information about you collected in this study. 4. Offer you the opportunity to participate in sub-studies. 5. Contact you between study visits to provide information about future HD research studies or find out information about your health status or wellbeing.
Have any questions or want to learn more? Leave your contact details below and the research team will reach out to you.