Abstract HUP14: Impact Of Socioeconomic Status And Race On The Access To Specialized Care And Enrollment/adherence In Clinical Trial In Cerebral Cavernous Malformations

Background: Cerebral cavernous malformation is a common lesion affecting more than a million Americans, with potential severe sequelae. It is unclear how socioeconomic status (SES) and race influence access to specialized care, and the enrollment and adherence in clinical trials aimed at novel therapies for CCM. Methods: We analyzed a cohort of patients harboring CCM lesions screened for IRB approved research studies between 01/2010 -12/2021 at an accredited center of excellence for CCM, leading NIH funded clinical studies. Demographics, lesion location, history of hemorrhage, insurance type and area of deprivation index (ADI) were collected. Insurance type was categorized as commercial, Medicare/Medicaid, or out-of-pocket. The ADI ranking score was analyzed per decile with 1 (least disadvantaged) through 10 (most disadvantaged). Primary outcomes were clinical follow-up within a year from the 1 st visit for all CCM patients (excluding pregnancy), and enrollment/adherence among eligible subjects for first in disease NIH funded clinical trial [clinicaltrials.gov NCT02603328]. Statistical analysis (Chi 2 test; t-test) was applied to determine whether these differed in ADI groups, races or insurance type categories. Results: Despite the institution’s location in an area with majority African American population and lower SES, only 11.5% of subjects were African American, and the majority (52.8%) had a high SES (ADI 1-3). As expected, patients who had a symptomatic bleed were more likely to follow-up (p=0.01), and those with brainstem lesion were more likely to enroll and adhere in clinical trial (p=0.02). Correcting for these confounders, there was no difference in rates of clinical follow-up or enrollment/adherence among different ADI groups, races or insurance coverage. Conclusion: Access of disadvantaged patients and races to a center of excellence care and research remains limited despite geographic proximity to their community. Contrary to common belief, patients with poor SES and African Americans are as likely to follow-up and enroll/adhere in clinical trials, if provided access to specialized care. Mitigation efforts should target systemic causes of low access to specialized care among poor and African American patients.