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myHDstory® Platform

MyHDStory Registered

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!

Project AWARE 2.0

LEAD-HD

Making HD Voices Heard

Making HD Voices Heard was the first study hosted on the myHDstory® platform. This observational study captured data to represent how HD patients experience their symptoms and how the disease affects their wellbeing.
Learn more about Making HD Voices Heard

Special Thanks!

The Huntington Study Group would like to acknowledge and thank the following individuals and organizations for their support of myHDstory®

Bookmark this page to keep up to date on future myHDstory® studies from the Huntington Study Group.