Huntington’s Disease Research Roster
What is the Huntington’s Disease Research Roster?
A research roster of Huntington’s Disease patients and families was established in 1979 at Indiana University in response to a recommendation from the Commission for the Control of Huntington’s Disease and its Consequences. The Roster is sponsored by the National Institute of Neurological and Communicative Disorders and Stroke. Because the cooperation and assistance of HD patients and families is vital to research, we are asking your help.
The HD Research Roster computerizes the names of families, including information about the history of HD in the family (family trees) and other related data. This information identifies HD patients and families who are interested in participating in research projects.
What does the Roster do?
Many investigators are intrigued by Huntington’s Disease and are eager to work on the problem but need access to HD families. It is important to have a system whereby scientists and HD families can get in touch with each other. The Roster makes this happen by matching the scientist with the right research volunteers listed in the Roster. Some researchers only need statistical information while other special projects may require a sample of blood, urine or skin from HD family members. The people on the staff explain the particular research study to each individual or family. Then, if they are willing to participate and give written permission, the individual’s family name and address are given to the investigator.
Not everyone listed in the Roster will be asked to be part of a research project. Information provided by each family will be coded (so that no will ever know their identity) and pooled with others in the Roster to provide important statistical information.
Important facts about the Roster:
- It is totally VOLUNTARY.
- You can ask to be taken off at any time.
- No information about you will be given to anyone without your WRITTEN permission.
- No one, including your own family members, can find out if you are even listed in the Roster without your WRITTEN permission.
- You will never be pressured to do anything or to participate in any research unless you so choose.
How to be listed on the Roster:
If you wish to be listed on the Roster, please contact us for more information. To become a member of the Roster you will need to fill out a family history Questionnaire and an Informed Consent Form, available by calling the Roster at (317) 274-5744 or e-mail slcraig@iupui.edu.
We appreciate your help in this matter of vital concern to us all.