Triplet Therapeutics is a Boston-based biotech company that is developing therapies for CAG repeat disorders like HD. Their focus is studying and stopping the expansion of CAG repeats in cells of the brain and body as people with HD age. Triplet announced today that their natural history study, called SHIELD HD, has fully recruited participants ahead of schedule. This study will not involve a treatment but will follow about 60 adults (age 18 – 63) with the HD gene for seven study visits over the course of 2 years, to better understand CAG repeat expansion and how it relates to HD symptoms. It’s a reflection of the strength and engagement of the HD community that this trial recruited so quickly despite the ongoing pandemic. More information about the study is available on ClinicalTrials.gov (NCT04406636).
Hereditary Disease Foundation Research Symposium
The Hereditary Disease Foundation funds research on Huntington’s disease and other rare disorders. They are hosting a virtual Gala and Symposium this coming Tuesday, November 17th from 7-8 PM Eastern. The event is free and will feature scientists and representatives from Novartis, Roche, uniQure, Wave, and the National Institutes of Health. Speakers will provide an update on current HD clinical trials and what to expect in the coming year. Recipients of this year’s HDF research awards will also present their cutting-edge research. Click here to learn more and to register.
Rush University Study: Cognitive, Balance and Walking Deficits in HD
If you are located in or near the Chicago area, consider participating in a study investigating the relationship between thinking and movement impairments in HD. This project, headed by PhD candidate Nicollette Purcell, investigates the brain activation patterns of individuals with HD during multi-tasking, using a wireless and wearable brain activity monitoring technology. Participants must be age 30 or older, with a clinical diagnosis of HD, and the ability to walk and stand unsupported for 5 minutes. Participation involves one visit for approximately 3.5 hours, and will involve balance, walking, and thinking tests. If you are interested in participating please email Nicollette_L_purcell@rush.edu.
Survey Study: How do you think about genetic testing?
You are invited to participate in a research survey conducted by Researchers at the University of Pennsylvania and Isaac Elysee, Master’s student in the University of Pennsylvania Genetic Counseling Program. The goal of this study is to compare how individuals at risk for HD and their close companions and loved ones think about predictive genetic testing for HD and weigh the decision. This study may help genetic counselors and other clinicians better attend to the needs of HD patients and families in the future. This study is open to anyone who is at least 18 years old and is at risk for, diagnosed with, or knows someone with HD. The study consists of a short online survey and an optional, short audio-only interview over Zoom. Those who complete the Zoom interview will be eligible to win a $25 Amazon e-gift card. To take the survey or for more information about the study, please click here.