The goal of the Roster is to act as a link between patients and families affected by Huntington disease (HD) and scientists interested in gaining a better understanding of this disorder. Many scientists are eager to study HD but have difficulty locating people affected by the illness. Likewise, many patients are interested in participating in research about their disease, but are not aware of scientific studies that may be available. The Roster works to unite patient and scientist in order to encourage successful research studies which may lead to new treatments and an eventual cure.
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. Researchers may request contact with families to obtain specific information. In these instances, the Roster will contact participants to ask if they are willing to share identifiable information for a research project. All information requests must be reviewed and approved by a Scientific Advisory Committee. No information will be given to researchers without Roster participants' written permission. There is no obligation to participate in any project.
For more information, download a Roster brochure.