Participation in the Roster involves providing information about your family's history of Huntington disease (HD). This information is collected through two different questionnaires:
- Family History Questionnaire
Participation in the Roster begins with the completion of a Family History Questionnaire. This form collects information about your family tree and those individuals diagnosed or having signs of HD. Usually one person in the family completes this form. After the questionnaire is returned to the Roster, our staff enters the family information into a secure, computerized database. We currently have family history information from nearly 3,000 participating families in our Roster files.
- Questionnaire for Affected Individuals
After receiving and computerizing the information on the Family History Questionnaire, Roster staff will request information about the clinical symptoms of HD in your family. This information is collected using a form called the Questionnaire for Affected Individuals. This questionnaire is completed for each person in the family diagnosed with HD and collects detailed information about their disease symptoms and medical history, such as when and how symptoms began and how symptoms progressed over time. The data collected on the Questionnaire for Affected Individuals is also entered into our computerized database. We currently have information about the clinical symptoms of HD from over 2,500 individuals.
The Roster staff will contact each participating family periodically to obtain updated information. This typically includes any new births, deaths or marriages in the family, or any individuals who were recently diagnosed with HD.
To become a member of the Roster, or if you have any questions, please contact us.