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.
Participation in Project AWARE 2.0 is now open to individuals who live in the United States, are 18 years of age or older, and either have HD or are at risk for having HD. To learn more including how to enroll, please visit https://www.myhdstory.org/.
About Huntington Study Group
The Huntington Study Group®, a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., are world leaders in designing and conducting clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG conducted all three pivotal clinical trials that led to the only FDA-approved medications for Huntington’s disease associated chorea. The organization is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.
About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.
About Roche
Throughout their 125-year history, Roche has grown into one of the world’s largest biotech companies, as well as a leading provider of in-vitro diagnostics and a global supplier of transformative innovative solutions across major disease areas. Their commitment to their people, partners, stakeholders and, most importantly, their patients remains as strong as it was on the first day of their journey.
About Genentech, Member of the Roche Group
Genentech was founded in 1976, becoming a member of the Roche Group in 2009. Genentech is a leading biotechnology company dedicated to pursuing groundbreaking science to discover and develop medicines for people with serious and life-threatening diseases. Its transformational discoveries include the first targeted antibody for cancer and the first medicine for primary progressive multiple sclerosis.
About Neurotargeting, LLC
Neurotargeting specializes in developing innovative digital health solutions for neurodegenerative disorders. With a team comprising both physicians and engineers, we have designed a system that integrates seamlessly into clinical workflows, EHR, and PACS, providing a cohesive view of multiple data sources for enhanced patient outcome tracking and decision-making.
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