Michael O’Brien, Program Manager, Huntington Study Group
Lauren Seeberger, M.D., Faculty, CAMC Neurology
An initiative led by the Huntington Study Group, with funding from Genentech and HD-Net, was developed to assess the current state of HD care in the United States. The project’s first initiative was to understand how HD care is administered via a series of research questions posed to physician practices where HD patients are treated. The survey topics addressed five domains: practice characteristics, patient characteristics, HD care, barriers to care, and HD training and education.
The results of the survey, which have been recently submitted for peer review, highlight the inconsistencies in how HD care is administered across the US. Generally, the research revealed that practices led by neurologists with formal training in movement disorders, or those practices seeing a larger number of HD patients, were more likely to maintain a multidisciplinary team approach. Practices with either a designated HD or other multidisciplinary clinic also fared better in this regard. Alternatively, half of practices cited the lack of certain disciplines to treat HD patients, including dieticians, genetic counselors, psychologists, psychiatrists, care coordinators, or occupational or speech therapists.
Other results expressed the need for increased education about HD among the medical community, and on the standards for diagnosing and caring for HD patients.
The output from the HD-Net survey has already prompted a pilot study to explore the benefits of creating hub and spoke models among centers of excellence sites with those practices lacking the understanding or the full capabilities to provide HD care.
