WHAT IS myHDstory®?
myHDstory® is an online direct-to-patient research platform developed and owned by Huntington Study Group (HSG). The goal of the platform is to break down barriers to research participation, allowing HSG to engage a broader, more diverse population in support of our mission of accelerating treatments that make a difference.
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!
Burden of HD Chorea
- Status: Completed
Project AWARE 2.0
- Status: Completed
LEAD-HD
- Status: Currently Enrolling
Making HD Voices Heard
- Status: Completed
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.