How Researches Can Learn About the Roster

The National Research Roster for Huntington Disease Patients and Families has been collecting family history information and clinical information from families with Huntington disease (HD) for over 30 years.

Information being collected
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

Requesting Roster Information
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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