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.
Preliminary Survey Results
As we continue to collect responses from the HD community, we will share insights on the patient experience at HD clinics so both the community and industry can learn from these perspectives.Do you see your state represented on the left?
Please help us broaden representation by filling out and sharing our survey. Our survey is ongoing!Stay tuned for more updates! 📊
Results by Survey Section
Survey Participant Information 📋
Clinic Experience & Accessibility 🏥
Clinic Services 🩺
Clinical Trials & Observational Studies 🥼
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
‼️ Urge the FDA to Uphold Accelerated Approval ‼️
In a historic milestone for the Huntington’s disease (HD) community, AMT-130 by uniQure is the first therapy to show potential in slowing HD progression. Despite the promising data, the FDA has hesitated to allow uniQure to submit a Biologics License Application (BLA), creating an unnecessary delay in access to this potentially life-changing treatment.Please sign both petitions below to urge the FDA to fairly and promptly consider AMT-130 for Accelerated Approval based on their prior support of using external control data from natural history studies.Patients and families cannot wait.
Also, please use the link below to send letters to your members of Congress urging them to support the fair review of AMT-130!
There are different templates available for people living with HD, family members, and community supporters.
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.