| The National
Research Roster for Huntington Disease Patients and
Families has been collecting family history information
and clinical information from families with HD for nearly
25 years. The database currently includes information
from over 2,700 families and 134,000 individuals.
The following information is collected and maintained
for each family participating in the Roster:
- Family history
- Epidemiological and demographic data
- Physical, mental, and emotional symptom initiation
and progression
- Medication history
- Diagnosis and age of onset
- Treatments pursued
- Social and psychiatric symptom history
- Family impact
Scientists interested in studying HD may submit two
types of requests for information contained in the Roster.
The two types of information requested are anonymous
information and identifiable information. Anonymous
information does not contain any names or personal identifiers,
and can be given to researchers without having to contact
Roster families. Identifiable information includes data
such as names, dates of birth, and family structure.
Additionally, identifiable information can be used to
provide a researcher with a subject recruitment base
of individuals interested in participating in new research
studies.
Learn more >
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