Participants diagnosed with HD, ages 18-70, in the Chicago area, are needed for an HDSA-funded study on Telemedicine at Northwestern University. This study aims to find out if telemedicine clinic visits are as good as in-person clinic visits for completing a Huntington’s-focused Neurologic exam and thinking and memory tests. The study will determine if Huntington’s patients, their care partners and family are satisfied with telemedicine visits, and if they reduce the burden of travel and cost. To learn more about the study and to contact the research team, please check out this flyer.
This study is being conducted by Dr. Danielle Larson, a doctor and researcher at Northwestern University working with HDSA Center of Excellence director Dr. Danny Bega. She was awarded a 2019 HDSA Human Biology Fellowship for her proposal, which has the potential to improve access to expert HD care through Telemedicine. We are featuring an HD Researcher Spotlight with Dr. Larson on the HDSA website, where you can learn more about how she got involved in HD research and what the HDSA support has meant to her.
This Week in HD History: Tetrabenazine Approval
On August 15th, 2008, tetrabenazine (Xenazine) was approved by the FDA to treat chorea, the involuntary movements associated with HD. This represents a significant milestone in HD research because it was the first treatment to be approved specifically for HD in the United States. Although it is one among many pharmacological treatments to help control symptoms, its approval raised awareness of HD and created a standard for control of chorea which must be met by other drug treatments moving forward. A dozen years later, there are now dozens of companies working on treatments aimed not only at HD symptoms, but at its root genetic cause.
Online Survey for Caregivers
Dr. Kim Shifren of Towson 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 survey, please click here.