WHAT IS myHDstory™?
myHDstory™ is an online research project sponsored by the Huntington Study Group (HSG). It will help us to understand how Huntington disease (HD) affects patients, care partners, and those at genetic risk for HD. myHDstory™ was created as a research platform to enable people impacted by Huntington’s disease to report their symptoms and voice their priorities.
The information we collect will help create:
- A profile of patient-reported experiences of what it is like living with HD
- Outcomes for clinical trials based on symptoms that are important to to the HD community
- A resource to enable people to easily participate in new HD research
- A de-identified, shared database for researchers to help them understand what people impacted by HD feel and experience
- Publication of the results of the research findings that will be shared with participants, the broader HD community, and researchers around the world
AVAILABLE RESEARCH STUDIES THROUGH myHDstory™
Below are the studies being conducted through the myHDstory™ online platform and information about whether the study is enrolling participants. To learn more about each study or to get a link to enroll, expand the sections by clicking the indicator next to each section header title. Additional studies will be added soon!
Special Thanks!
The Huntington Study Group would like to acknowledge and thank the following individuals and organizations for their support of myHDstory™
- Griffin Foundation
- NJ Cure HD
- Ira Shoulson
- Elise Kayson-Rubin and Richard Rubin
Bookmark this page to keep up to date on future myHDstory™ studies from the Huntington Study Group.