HSG Closing Thoughts

Posted on at May 25, 2023
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HSG Closing Thoughts

As this 29th issue of HD Insights is being read around the globe, Huntington Study Group (HSG) is planning the 30th Annual Meeting in Phoenix, AZ from November 2-4. We have been on an incredible 30-year journey since the HD gene was discovered and HSG was formed. We’re proud to reflect on our history, growth, and accomplishments that support our vision of improving the lives of people impacted by Huntington’s disease through research, education, and collaboration.

HSG continues to grow. Our staff has more than quadrupled, our membership is constantly expanding, and our network includes over 20,000 HD participants and more than 130 HSG Credentialed Research Sites worldwide. Everything we have accomplished has been thanks to our incredible network — the people whose expertise, compassion, commitment, and hope make HSG who we are. We are thankful for each and every one of you and hope you will all join us as we continue working to accelerate treatments that make a difference for Huntington’s disease.

If you’re interested in learning more about any of the studies described above, please visit huntingtonstudygroup.org.

We look forward to seeing you in Arizona!
Huntington Study Group

NOTABLE HIGHLIGHTS IN OUR 30-YEAR HISTORY

  • Conducting 40 trials and studies, including the first and only two FDA-approved drugs for Huntington’s disease.
  • Formalizing our gold standard clinical operations through formation of our clinical research organization, HSG Clinical Research, Inc., that is devoted to conducting clinical trials in HD.
  • Developing the Unified Huntington’s Disease Rating Scale (UHDRS®) which is commonly used as a primary endpoint in HD trials.
  • Designing, conducting, and funding an observational study, vUHDRS™, to determine the reliability of administering the UHDRS® virtually.
  • Developing and launching a novel online platform, myHDstory™ to allow remote participation in research, enrolling over 600 participants in the platform’s pilot study, Making HD Voices Heard.
  • Developing and conducting observational studies to assess key barriers to research participation and gaps in care (HD Care Improvement Project).
  • Building online and in-person education programs to train and educate investigators, coordinators, participants, sponsors, clinicians, and others about HD clinical research and care.

myHDstory™

Launched in 2022, this novel online direct-to-patient research platform enables participation in online research, reaching more participants.

The pilot study on the platform, Making HD Voices Heard, was conducted to allow for a better understanding of Huntington’s disease, including how participants experience their symptoms and how the disease affects overall health and personal well-being. The study successfully enrolled close to 700 participants over eleven months, and the data is currently being analyzed.

HSG plans to host additional studies on the platform in the future.

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