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Enroll-HD is a continuing global observational study of Huntington’s disease. The study collects a common set of data for all participants across all sites around the world that determine what interventions work to improve the care of people with HD, and assist researchers in developing more effective clinical trials. CLICK HERE
The HDSA Scientific Advisory Board (SAB) is comprised of leading experts in their fields. The Scientific Advisory Board's role is to advise the Board of Trustees and HDSA Management on a range of issues. In general, the SAB provides scientific review of research proposals to ensure that the research programs at HDSA are scientifically sound, pertinent and provide a high impact to the HD research community. The SAB can be called upon to advise HDSA on any scientific issues that may arise (e.g., stem cell policy, use of animals in research). CLICK HERE TO VIEW PROFILES OF BOARD MEMBERS
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HDBuzz.net is the first internet portal for the rapid dissemination of high-quality Huntington’s disease (HD) research news to the global community, written in plain language, by HD clinicians and scientists. It covers laboratory and clinical research, with the aim of helping HD people to understand the latest HD science, on their own terms. All content is disseminated from hdbuzz.net via free syndication to other HD community websites, blogs and social media platforms like Facebook and Twitter. CLICK HERE TO VISIT HDBUZZ.NET
Hello, my name is Neli Dragneva and I am a third-year psychology student at Liverpool Hope University. This study is for my dissertation which is investigating the effects of optimism, disease duration and illness perceptions (beliefs) on quality of life in adults affected by Huntington’s disease. In order to be eligible to participate, you must…
CLICK HERE TO LEARN MORE ABOUT THIS SURVEYResearchers from the University of Leicester in the UK, alongside HD clinicians, are trying to find out about psychological well-being among those who have tested positive for HD (whether symptomatic or not), and those at-risk of HD. The aim of this research is to help understand how people living with HD might best be supported…
CLICK HERE TO LEARN MORE ABOUT THIS SURVEYDr. Kim Shifren of Towsen University in Maryland is conducting a study on caregivers across the lifespan. If you have provided care for a parent or adult relative with Huntington’s disease, then you may be eligible to participate in this study. The study takes about 30 minutes to complete and includes self-assessment of caregiver experiences,…
CLICK HERE TO LEARN MORE ABOUT THIS SURVEYWe invite you to participate in a research study conducted by investigators at The University of Pennsylvania. The purpose of this study is to evaluate the knowledge and perception of individuals towards gene therapy for Huntington’s Disease (HD).This survey is meant to obtain information about an individual’s beliefs and attitudes towards gene therapy for HD….
CLICK HERE TO LEARN MORE ABOUT THIS SURVEYInvestigators at the University of Iowa are conducting a study about symptoms of Juvenile Huntington’s Disease (JHD) that may occur frequently, but are poorly recognized by health care professionals. We are inviting adults who have been the primary caretaker for someone who has been diagnosed with JHD to complete an online survey to describe…
CLICK HERE TO LEARN MORE ABOUT THIS SURVEY