Each year HDSA’s annual research report, The Marker, covers the past year in HD science and HDSA research activities. Check out The Marker 2020 for updates on clinical trials, news from HD research conferences, HDSA’s research programs and more. HD research progress has marched steadily onward in the face of 2020’s many challenges, which is a testament to the strength of our worldwide community. Click here for The Marker: HDSA’s Annual Research Report.
Ask the Scientist…Anything!
If you missed this week’s Ask the Scientist Anything webinar, featuring Dr. Jeff Carroll, Dr. Rachel Harding, and Dr. Sarah Hernandez of HDBuzz, the recorded webinar is now available to view on HDSA’s YouTube channel. Topics ranged widely, and our panelists answered questions about expanding CAG repeats, clinical trial eligibility and participation, below-the-belt issues in HD, prevention studies, drug access, and much more.
Rush University HD Brain Activation Study
A team of scientists at Rush University are researching brain activation during thinking and movement tasks in people with Huntington’s disease. Participants age 30 and above with a diagnosis of HD are needed for one 3.5-hour clinic visit to the HDSA Center of Excellence at Rush University. For more details and contact information, please see the study flyer.
Research Studies You Can Do at Home
Check out some of the ways you can contribute to HD research remotely this holiday season, with just a few minutes to an hour of your time – some of these studies even offer incentives.
Developing Speech as a Biomarker for HD
If you’re looking for an easy and fun way to participate in research that could impact HD and other neurodegenerative disorders, consider participating in a 5-minute online speech study. Researchers from the Linguistic Data Consortium at the University of Pennsylvania are working on a cutting-edge project to identify and treat HD and neurodegenerative disorders far earlier than current methods. By performing simple, anonymous speaking tasks at this link you can help them track brain health over time. From the research team:
Our goal is to create a web app that uses language to track neural health and identify the early onset of neurodegenerative disease in the same way that smart watches and phone apps track physical health.
- Speech and brain health are tightly linked, thus we plan to develop software to detect subtle changes in speech patterns that signal the beginning of neurological disorders.
- We plan to detect verbal decline on an individual basis to flag the need for medical attention just as sudden weight loss would.
- Earlier detection will give therapies and medications that may not currently be effective a greater chance of better outcomes.
- By adding a simple, brief audio sample to our data set, you join the fight against HD and other brain diseases.
Participants Needed: Paid Phone Interview Study
Make your voice heard and help to provide the healthcare industry with valuable information about your family’s experience with HD. If you or your spouse has been diagnosed with Huntington’s disease or tested positive for the HD gene in the past 2-5 years, you may be eligible to participate in a paid marketing research study. If you qualify and participate you will be paid $175 for a single 60-minute telephone interview. For more information and to contact the study coordinators, check out this flyer.
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.
