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Making HD Voices Heard

Making HD Voices Heard

Making HD Voices Heard was the pilot study conducted on HSG’s online direct-to-patient research platform, myHDstory®. The purpose was to capture the lived HD patient experience in participants’ own words to help researchers: 
  • Create a profile of patient-reported experiences of living with HD symptoms.
  • Develop a deidentified database to a better understanding of what people diagnosed with HD feel and experience, including symptoms and how the disease affects overall health and wellbeing.
  • Consider outcomes for clinical trials based on symptoms that are important to the HD community.
  • Plan additional studies for the myHDstory® platform.

Pilot Study Outcome

Topline results showed that the pilot study successfully:
  • Engaged a high number of HD patients who had never participated in research.
  • Reached a more racially and geographically diverse population than any other HD study.

Pilot Study Participation

Participation in the pilot study was voluntary and at no cost.

  • No medical treatments or medical advice were provided as part of the pilot study.
  • Around 400 eligible participants met the study enrollment criteria

Post-Study Information

At the conclusion of the pilot study, participants were asked to share their experience and opinions through a satisfaction survey.

Topline results were shared with study participants through a virtual meeting and with researchers at HSG’s 2023 annual meeting. The study results have been accepted for publication in the Journal of Huntington Disease and is currently in press.

Making HD Voices Heard Study Video