A group of researchers at the HDSA Center of Excellence at Rush University are studying how the brains of people with HD are activated during cognitive and movement tasks. If you are at least 30 years old and have a clinical diagnosis of Huntington’s disease, you may be eligible to join. Participants will be observed while completing a series of thinking tasks and functional balance and walking assessments, and receive two MRI’s–one with the initial visit and one as a two-month follow-up. To learn more and see whether you’re eligible, view the study flyer here or visit HDTrialfinder.org.
Upcoming HDF Webinar: CRISPR in HD Research
Next Wednesday, April 20th, at noon ET, tune in to the Hereditary Disease Foundation’s research spotlight webinar, “Developing regulated CRISPR for HD.” Join Drs. Beverly Davidson and Alejandro Mas Monteys from the Children’s Hospital of Philadelphia and University of Pennsylvania for a lay-language discussion on their work developing next generation therapeutics for inherited disorders. To learn more and register to attend, click here. You can also access last month’s HDF research webinar on gut health and HD here. It was presented by Dr. Ali Khoshnan, whose work on gut bacteria in HD was also supported by HDSA.
myHDstory: online pilot study for people affected by HD
The Huntington’s Study Group (HSG) recently launched an online research project to learn more about how HD affects people with the disease, care partners, and people at risk for HD. Called myHDstory, this online research platform was developed with the goal of better understanding the experiences of people living with HD, determining clinical outcomes important to people affected by the disease, and gathering de-identified data of their experiences. HSG is now recruiting participants for a pilot study in the online platform, “Making HD voices heard.” This study will ask people 18 years and older with a diagnosis of HD to report on their experiences and day to day functioning with the disease. To learn more and see if you may be eligible to participate, visit the HSG website, view the study listing on HDTrialfinder.org, or email info@myhdstory.org.
