National HD roster essential for research, clinical trials
You and your family can help advance HD research by registering with the National Research Roster for Huntington’s Disease Patients and Families (HD Roster).
Hosted by Indiana University, the HD Roster has been funded by the National Institute of Health since 1979 and is a unique nationwide information resource dedicated to facilitating scientific research on HD.
The goal of the roster is to provide a link between patients and families affected by HD and scientists interested in gaining a better understanding of this disorder. The HD Roster contains information on over 2,300 families consisting of over 140,000 family members.
The roster has facilitated hundreds of research studies by fulfilling two types of requests from researchers. They can request data without any identifying information for statistical analysis to search for trends or symptoms that patients have in common, or they can ask the registry to help them recruit subjects who have certain characteristics or symptoms that might qualify them to take part in clinical or treatment studies. In this last instance the registry would identify those individuals who meet the criteria, then inform them of the study.
It is important to understand that under no circumstances would any identifiable information ever be released to a researcher without the explicit written permission of the registry participant. All requests from researchers are reviewed by a scientific advisory committee.
For more information, please visit
You and your family can help advance HD research by registering with the National Research Roster for Huntington’s Disease Patients and Families (HD Roster).
Hosted by Indiana University, the HD Roster has been funded by the National Institute of Health since 1979 and is a unique nationwide information resource dedicated to facilitating scientific research on HD.
The goal of the roster is to provide a link between patients and families affected by HD and scientists interested in gaining a better understanding of this disorder. The HD Roster contains information on over 2,300 families consisting of over 140,000 family members.
The roster has facilitated hundreds of research studies by fulfilling two types of requests from researchers. They can request data without any identifying information for statistical analysis to search for trends or symptoms that patients have in common, or they can ask the registry to help them recruit subjects who have certain characteristics or symptoms that might qualify them to take part in clinical or treatment studies. In this last instance the registry would identify those individuals who meet the criteria, then inform them of the study.
It is important to understand that under no circumstances would any identifiable information ever be released to a researcher without the explicit written permission of the registry participant. All requests from researchers are reviewed by a scientific advisory committee.
For more information, please visit
or contact Shelley Burnham, the project’s clinical research coordinator,
at 317-274-5744
or sburn@iupui.edu.
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