HDSA’s HD Trialfinder is an easy-to-use website that lists currently recruiting HD clinical trials in the United States and Canada. By answering some basic questions about yourself or a loved one, you can match to nearby HD trials. You can also use the site to explore and read about trials happening all over the country.
If you haven’t checked it out, or haven’t re-visited to match for a while, go to www.hdtrialfinder.org. Notable additions this week are a new study being conducted by Annexon biosciences and some small changes to uniQure’s gene therapy study, which received approval to move forward after the first two participants had no dangerous side effects or safety issues after undergoing surgery.
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 fits at least one of the following criteria:
• You have personally considered having genetic testing for HD OR
• You are currently considering having genetic testing for HD OR
• You have a close relationship with someone who has considered or is currently considering genetic testing for 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.
BRAIN Initiative High School Essay Contest
The Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative is a huge research project aimed at revolutionizing our understanding of the human brain. The National Institutes of Health are holding an essay and video contest for high schoolers asking students to express their perspectives on the ethical implications of new technologies used to study and treat the human brain. This could be on a wide range of topics, Huntington’s disease included. Who owns the information collected during human research studies? Should clinical trials recruit a broader range of people who have a particular disease? The contest is very open-ended and is a great opportunity for young people to share their ideas around the ethics of brain disease research and treatment.
Starting October 1, 2020, ideas can be submitted as a written essay or a video. Winners could receive up to $1000 in prize money. The deadline for submission is October 31, 2020 at 11:59 PM ET.
