Rochester, NY, April 10, 2024 — The Huntington Study Group® and HSG Clinical Research, Inc. (together, “HSG”) are pleased to announce the launch of Project AWARE 2.0, an observational study developed in collaboration with Roche Products Limited and Genentech to understand and improve Awareness, Willingness, and Ability for Research and Enrollment in clinical research.
HSG led Project AWARE 1.0 in collaboration with HSG members and advocacy partners in 2010, collecting the insights of over 600 individuals and families impacted by HD to identify awareness and common barriers to participating in clinical trials. As a result, Huntington Study Group developed novel methods to improve and elevate the quality of clinical trials by focusing on aspects of participation that were reported as most troublesome or misunderstood. Building on this success and the team’s experience with the changing clinical trial landscape over the past decade, Project AWARE 2.0 was launched to further explore the feelings, attitudes, and beliefs of HD family members, care partners, and others impacted by the disease regarding the communication and conduct of drug trials and observational studies.
“We know that learning from and listening to people impacted by Huntington’s disease is pivotal in unraveling the intricacies of research participation. Responses to this survey will provide invaluable information that will allow the HD research community to refine the design and execution of future trials and studies that will accelerate treatments for HD. We are proud to be working on this important study with Roche and extend our gratitude to those who are considering participating,” said Elise Kayson, MS, ANP, VP of Clinical Operations at HSG and the Study Principal Investigator.
Project AWARE 2.0 is now available on myHDstory®, HSG’s online direct-to-participant research platform that was developed in close collaboration with Neurotargeting, LLC, a team of physicians and engineers who specializes in developing innovative digital health solutions for neurodegenerative disorders.
Pierre-François D’Haese, PhD, CEO of Neurotargeting, said, “Our collaboration with HSG is not just a project; it’s a journey to develop innovative tools that reshape the research landscape. We have been working with HSG for years developing the myHDstory platform and are excited about working together to recognize the barriers to research participation and further advance the understanding of Huntington’s disease.”
Launched in 2022, myHDstory’s platform pilot study succeeded in having broader geographic and racial diversity reach than any other HD study and in engaging hundreds of people diagnosed with HD who had never participated in any trials or studies.