Roche recently created a video about Huntington’s disease that is narrated by HDSA Berman-Topper Fellow Lauren Byrne. The video is a great tool for explaining the genetics, the causes, and the symptoms of HD. In addition to being an HD researcher, Lauren is from a large HD family in Northern Ireland. Her work, in the laboratory of Dr. Ed Wild at University College London, focuses on better ways to diagnose and measure the progression of HD.
Compensated Phone Interview Study
Individuals with early-stage Huntington’s disease and a close companion are invited to participate in a research study via phone. If you are eligible and complete the interview, both you and your companion will be compensated $125. Sage Therapeutics and a research organization, Modus Outcomes, are working together to interview people diagnosed with Huntington’s disease and a companion who knows them well. Interviews will be conducted over the phone or in person at a location and time that is convenient for you and will take approximately 45-60 minutes for each participant. They are interested in hearing about your experience with early Huntington’s disease and the way it impacts your life.
You may qualify for this study if you:
− Are willing to participate in a 45-60 minute interview in person near Boston, MA or by phone
− Are between the ages of 25-65
− Have early manifest or pre-manifest HD (>36 CAG repeats, ability to perform some job functions, manage finances with some assistance, complete some household chores, and perform most activities of daily living with minimal assistance)
− Have a companion who knows you well and is at least 18 years old
If you are interested in learning more and to see if you qualify for participation, please contact Teya Lovell, Research Assistant at Modus Outcomes at teya.lovell@modusoutcomes.com or call her at 617-855-5704.
“Brain-in-a-dish” Study Suggests HD Affects Development
A group of HD researchers in Singapore, led by Dr. Mahmoud Pouladi, used human cells to study the effects of HD on development. An article in STAT, later picked up by Scientific American, describes how the team developed “HD organoids,” clumps of cells that form into structures that resemble brain tissue. Cells with the HD mutation developed and grew too fast, disrupting their normal function. This is not a “radical rethinking of HD” as the title suggests, but simply suggests that HD may have effects on the brain very early, long before symptoms appear in most individuals. This kind of research is important as novel genetic therapies are tested in humans, because it will strengthen the case for treating before people become sick.
