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 study to enable People Affected by Huntington’s Disease (PAHD) 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 PAHD,
  • A resource to enable PAHD to easily participate in new research.
  • A de-identified, shared database for researchers to help them understand what PAHD 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.

A critical first step for myHDstory™ is the Pilot Study Making HD Voices Heard. The Pilot Study will ask people living with HD to report what experience and how they function. The Pilot Study is 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 is 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 is being 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 are also interested in learning test results what the genetic testing experience was like for you.
  • At the conclusion of the Pilot Study, participants can share their experience and opinions about the Pilot Study in a satisfaction survey.
  • Participation in the Pilot Study is voluntary and at no cost.
  • No medical treatments or medical advice will be provided as part of this study.
  • We will use this study to better plan the next studies of the myHDstory™ project.

Eligible participants must meet 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 are encouraged to complete the study in one session, which will take about 2 hours, but may also save their progress and complete participation at another time. The study will be open for enrollment over a period of 3 months. During that time, we plan to enroll between 200-500 participants who have been diagnosed with HD.

If you qualify and agree to take part in this study, you will be 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.

If you are interested and believe you qualify to participate, you may click the button below to begin the enrollment process:

If you have additional questions about participating in the Pilot Study, 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.