HD Patients Accelerating Clinical Endeavors

Clinical Patient Experience Survey

We have implemented this survey because we believe the Huntington's disease (HD) community could benefit from a better understanding of patient experiences at HD clinics across the US. Our goal is to help community members and other key stakeholders to identify top HD clinics based on input from the community. This effort allows us to highlight what makes a clinic truly effective from a community perspective, as well as identify where improvements could be made.

Who is HD-PACE?

HD-PACE (Huntington’s Disease Patients Accelerating Clinical Endeavors) is an independent group of HD community advocates exploring opportunities to accelerate the pace of HD research. Since 2023, we’ve had many conversations with rare disease community members, doctors, researchers, and pharma representatives to better understand how to address the needs of the HD community.

Members of HD-PACE include (from left to right): Lauren Holder, Christy Dearien, Brianna Esker, Sarina Smith, and Seth Rotberg

Survey Results Coming Soon

As we gather results from the HD community, we will share feedback about the patient experience at HD clinics so the community and industry can benefit from these insights.Stay tuned for more! 👷

Connect With Us

Please email us at [email protected] with any questions you may have about our group or our projects! Please also connect with us on our socials to receive updates about the survey results and our other projects.