Summary
- uniQure joins HDSA for an update on AMT-130
- Online Surveys: Dietary Habits in HD, Attitudes toward Genetic Testing, Experiences with Psychotherapy
Upcoming Research Webinar: uniQure discusses AMT-130
Join HDSA on February 13th for a research webinar in which uniQure will present the latest update about their study of HD gene therapy AMT-130 in the ongoing HD-GeneTRX trial, and answer community questions. Speakers include Dr. Ed Wild, FRCP, Professor of Neurology at University College London, and Walid Abi-Saab, MD, Chief Medical Officer at uniQure. You can register to join here.
Online Surveys: Dietary Habits in HD, Attitudes toward Genetic Testing, Experiences with Psychotherapy
HDSA works with researchers all over the world to identify and share research studies that improve our understanding of HD and how it impacts the lives of the people it affects. Online surveys play a critical role in this task and are a great way to contribute to HD research from wherever you have access to the internet. Whether you are a person with HD, someone who cares for a loved one with HD, an individual who is at–risk for HD, or someone who is part of an HD family, there are researchers who value your experiences and want to hear about them. Click here to see all online surveys available through HDSA’s website and keep reading for the highlights of the most recent additions to the list.
- Are you at-risk for or living with Huntington’s disease (HD)? Researchers and physicians at Oregon Health and Science University invite you to participate in a brief online survey study designed to better understand dietary habits in the HD community. This survey will take 3-5 minutes to complete and is entirely anonymous. If you have any questions about this study, please contact wellsru@ohsu.edu or click here to participate.
- Are you experiencing symptoms of HD? A team of researchers are looking for individuals who have already started developing symptoms of Huntington’s Disease for a study which aims to understand the psychological consequences of genetic testing for Huntington’s disease. The study of an approximately 5-minute online survey, and the researchers will donate $2 to HDSA for each participant who completes the survey. Click here to take the survey.
- Have you engaged with psychological therapy? Researchers at The University of Reading (UK) are interested in gathering insights from people living with Huntington’s Disease (HD) who have participated in psychological therapy—whether successful or unsuccessful. Their goal is to better understand what is and isn’t helpful in psychological therapy practice. If you are willing to be interviewed about your experience, please get in touch with researcher Grieg Adams, g.r.adams@reading.ac.uk, to schedule a time to talk.
