The Huntington’s Disease Society of America (HDSA) designates centers of excellence (COE’s) based on access to multidisciplinary care for Huntington’s Disease (HD). Given UCLA’s COE designation since 2005 and its location in a diverse metropolitan county, we sought to evaluate our center’s clinical and sociodemographic characteristics. We conducted a retrospective, electronic health record (EHR) chart review of 458 persons with HD seen at UCLA between 2012 and 2024 with a goal to characterize patient’s clinical and sociodemographic characteristics, and clinical outcomes. Of 458 patients, 262 (57%) were female. For race and ethnicity, 61% identified as White Non-Hispanic, 26% Hispanic/Latino, 6% Black, and 3.5% Asian. On presentation, 29% had private insurance, 25% had Medicare, 16% had Medicaid, and 30% people were self-paying or had other sources of payment. The average time from symptom onset to diagnosis was 3.35 years (SD 7.19), with most patients (52%) reporting motor symptoms at time of disease onset. Nearly half of all patients received an HD diagnosis before presenting to UCLA (194, 51%). For disease management, 227 (55%) received antipsychotics, while 92 (20%) received VMAT2 inhibitors. The average duration of disease from time of first symptom onset was 12.5 years (SD 8.47). Data from our HDSA COE suggests that our clinic provides care for a larger proportion of historically underserved groups including Non-White patients with HD than what is typically reported in HD research. Questions remain about the impact of socioeconomic mediators and demographics on clinical outcome and access to COEs. Further studies should be conducted to analyze the impact of these factors on HD treatment to increase equitable care of Huntington’s Disease.
Okine et al. (Wed,) studied this question.