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NewsHSG UPDATES: myHDstory™ Pilot Study Celebrates Major Milestone

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July 2022

The HSG is excited to share that the pilot study, Making HD Voices Heard, on the new online research platform, myHDstory™, has reached its first enrollment milestone!  

“The HSG is beyond thrilled by the level of participation in this first-of-its-kind study. We are extremely grateful to all the Making HD Voices Heard participants,” said Dr. Karen Anderson, Professor of Psychiatry and Neurology at Georgetown University Medical Center and Principal Investigator of the Making HD Voices Heard study. “We hope the feasibility data and patient reports collected from this pilot will inform future direct-to-participant (DTP) research.  It is our goal to engage larger segments of the Huntington disease (HD) population, family members, and caregivers, improving HD care and treatments.”

The HSG collaborated with technology companies Grey Matter Technologies, Inc. and Neurotargeting, LLC to make this novel online research study accessible for qualifying United States residents to access. The myHDstory™ platform is intended to capture longitudinal data on Huntington disease from the patient perspective, giving voice to consenting adults to report what they feel, experience, and how they function with Huntington disease. This research platform is a significant opportunity for the HSG to serve the HD community because myHDstory enables collection of data directly from patients, in their own words, about their experiences living with HD, without in person study visits.
“We would like to thank the Griffin Foundation, NJ Cure HD, Ira Shoulson, Elise Kayson-Rubin, and Richard Rubin for their support of myHDstory™,” said Shari Kinel, Chief Executive Officer of the Huntington Study Group. “The HSG would also like to extend our appreciation to advocacy groups that helped raise awareness of the pilot study, including Help 4 HD, Huntington’s Disease Youth Organization (HDYO), HD Reach, and Huntington’s Disease Society of America (HDSA).”

For more information about myHDstory, visit https://huntingtonstudygroup.org/myhdstory/