Posted on February 7, 2019
HDSA Centers of Excellence provide world-class multidisciplinary care to families all over the United States. Professionals at these locations include neurologists, psychiatrists, social workers, therapists, and counselors with extensive HD experience who work together to provide care and support for families. Because HDSA is highly committed to supporting clinical research, Centers of Excellence must also demonstrate their ability to provide clinical research opportunities. Read more about the 2019 funding increase and this year’s 47 designated Centers in our February 6th press release.
Huntingtin-Lowering Research Featured in Nature Magazine
This week the prestigious journal Nature published an article about the Genentech/Roche Phase 3 trial of RG6042 that enrolled its first patient last week. It covers the excitement around this trial (with input from HDSA’s Dr. George Yohrling) and discusses other potential disease-modifying therapies in the works for HD, like the ongoing clinical trial by Wave Life Sciences, and the strategies in development by UniQURE and Voyager. Check it out for a comprehensive overview of all the ways that HD research is focused on slowing or stopping progression of HD symptoms.
Survey Study for Caregivers
Dr. Kim Shifren of Towsen University in Maryland is conducting a study on caregivers across the lifespan. If you have provided care for a parent or adult relative with Huntington’s disease, then you may be eligible to participate in this study. The study takes about 30 minutes to complete and includes self-assessment of caregiver experiences, personal characteristics, mental and physical health.
To be eligible to participate in this study you must be 18 years old or older, be able to complete the questionnaires yourself, and have provided care for a parent or adult relative with Huntington’s disease for at least one month, either currently or in the past. Providing care can include basic activities such as bathing, dressing, feeding and/or instrumental care which includes household tasks, shopping, finances, and providing medications.
To access the study, please follow this link: https://towsonpsychology.az1.qualtrics.com/jfe/form/SV_cA3cJPIMiFBymfH