| Participation
in the Roster involves providing information about your
family’s history of Huntington disease. This information
is collected through two different questionnaires
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.
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 call the Roster at 1.866.818.0213
or email us at hdroster@iupui.edu.
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