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 collected helped 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 is the study that was being conducted through the myHDstory® online platform. Enrollment has been completed, however, to learn more about the study or to get a link for enrollment in future studies, expand the sections by clicking the indicator next to each section header title. Additional studies will be added soon!

A critical first step for myHDstory® is the Pilot Study Making HD Voices Heard. The Pilot Study asked people living with HD to report their experiences and how they function. The Pilot Study was sponsored by the Huntington Study Group (HSG), in collaboration with technology companies Grey Matter Technologies, INC and Neurotargeting, LLC.

  • Our goal with this Pilot Study was to learn if replying using your own words and your own online devices is useful in understanding the problems that HD patients face.
  • This Pilot Study was conducted to help improve understanding of HD; for example, how patients experience their symptoms, and how the disease affects overall health and personal well-being.
  • For those HD-diagnosed research participants who have undergone genetic testing for HD, we were also interested in learning test results and what the genetic testing experience is like for individuals.
  • At the conclusion of the Pilot Study, participants shared their experience and opinions about the Pilot Study in a satisfaction survey.
  • Participation in the Pilot Study was voluntary and at no cost.
  • No medical treatments or medical advice were provided as part of this study.
  • We will use this study to better plan the next studies of the myHDstory® project.

Eligible participants met the following criteria:

  • Adults age 18 years and older
  • Willing and able to provide informed consent electronically.
  • Individuals answering as a participant must self-report they have been diagnosed with HD by a doctor.
  • Ability to answer online questions or direct someone else to enter answers for them.
  • Ability to ambulate independently and take care of some of his or her personal needs.
  • Ability to read and understand English.
  • Willing to create a unique identifier based on personal demographic information.
  • Residing in the United States or its territories
  • Owning or having access to an electronic device (laptop, smartphone, or computer) and secure internet connectivity

Someone who does not meet all these requirements cannot participate in the Pilot Study, but can register to be contacted for future studies in which they might choose to participate.

Participants were encouraged to complete the study in one session, which took about 2 hours, but may also save their progress and complete participation at another time. The study was open for enrollment over a period of 3 months. During that time, we enrolled between 200-500 participants who have been diagnosed with HD.

If you qualified and agreed to take part in this study, you were asked to complete the following tasks:

  1. Connect to the myHDstory® online platform using your own compatible smartphones, laptops, desktops, or tablets.
  2. Choose if you want to complete this one-time study using an app or web-based browser access on your computer device.

If you have technical problems with the online study platform, you can contact the study by completing and submitting the form available from the “HELP” link on the menu banner in the app.

You may report unwelcome or inappropriate emails to the sponsor, Huntington Study Group (HSG), via the email info@myHDstory.org.

Enrollment for the Pilot Study was completed, but if you are interested in enrolling in future myHDstory studies, you may click the button below to begin the registration process:

If you have additional questions about participating in future myHDstory studies, please contact the HSG.

Email: info@myhdstory.org
Phone: 800-487-7671


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.