To Improve Awareness, Willingness and Ability for Research and Enrollment in Clinical Research
What is the Project AWARE 2.0 Survey?
Project AWARE 2.0 is a pivotal study aimed at enhancing the design and implementation of drug trials and observational studies for Huntington’s disease (HD). By participating, you contribute valuable insights that help researchers understand the factors influencing participation in such critical research efforts.
Getting Started
Participation in Project AWARE 2.0 is available to individuals who live in the United States, are 18 years of age or older, and either have HD or are at risk of having HD.
To take part in the Project AWARE 2.0 Survey, visit www.myhdstory.org.
- New Users: If you’re not registered on the myHDstory® platform, you’ll be guided through a straightforward registration process, after which you can participate in the survey if you qualify.
- Registered Users: If you’re already a member of the myHDstory® community, simply log in with your existing credentials.
Why Your Participation Matters
Your input is a cornerstone in the HD research community’s effort to accelerate the development of treatments that make a difference for people affected by HD. The insights gained from this survey are instrumental in:
- Understanding the reasons behind participation or non-participation in drug trials and observational studies.
- Guiding HD researchers in tailoring study designs to address common concerns and misconceptions.
Background: From Project AWARE 1.0 to 2.0
In 2010, the Huntington Study Group (HSG), in collaboration with its members and advocacy partners, initiated Project AWARE 1.0. The study gathered insights from over 600 individuals and families impacted by HD and identified key barriers to clinical trial participation.
As a result, the 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.
Project AWARE 2.0 & myHDstory®
Project AWARE 2.0 is a collaboration between Huntington Study Group, Genentech, and Neurotargeting, LLC.
Learn more about myHDstory®
