Abstracts

Rationale:
Pediatric epilepsy patients face varying exposure to vulnerabilities that can adversely impact their patient care. Specific inequities in access to neurological assessments, genetic counseling, and epilepsy care providers pose challenges to creating inclusive and representative clinical research cohorts. This study assessed potential disparities in the representation in clinical research of a generalized epilepsy cohort known as the “G40+ cohort” within a clinical research sub cohort, the Epilepsy Genetics Research Project (EGRP).

Methods:
Two separate cohorts were used to assess various measures of vulnerability. The two cohorts were the Epilepsy Genetics Research Project (EGRP), which includes 2,855 children with known or presumed genetic epilepsy and neurodevelopmental disorders, and the G40+ Cohort, which includes  21,837 individuals from the Children’s Hospital of Philadelphia (CHOP) seen between November 1^st 2015 and June 5^th 2023, who had a ICD10 code beginning with G40, R56, or P90 in their chart at time of their outpatient Neurology encounter, the subset of ICD10 codes that includes all epilepsy diagnoses. This G40+ cohort served as a proxy for individuals most likely to be recruited for EGRP. Data were gathered for individuals using a secure research database (REDcap) and electronic health records (EHR). Individuals were assessed by Social Vulnerability Index (SVI), geographical location, race, and ethnicity. SVI was assessed for both cohorts and stratified across four separate categorizations: High, Medium High, Medium Low and Lowest Subjects who were members of EGRP from the G40+ cohort (n=2,441) were compared against those from the G40+ cohort who were not part of EGRP.

Results:
Participating subjects in EGRP who self-identified ethnically as Hispanic or Latino were more represented within the EGRP cohort as compared to the G40+ cohort (OR 1.16, CI 1.20 – 1.31, p < 0.05). By self-identified race, it was also found that individuals identifying as White had a larger representation in EGRP (OR 1.28, CI 1.18 – 1.40, p < 0.05) as compared to Black or African American Patients (OR 0.59, CI 0.52 – 0.66, p < .05). Individuals identified as High SVI were less reflected in the EGRP cohort as compared to the broader G40+ cohort (OR 0.85, 95% CI 0.76 – 0.96, p < 0.05). In our preliminary analysis we have also mapped the geographical distribution of individuals according to place of residence and have found that the majority of those involved are from Southeastern Pennsylvania, New Jersey, Maryland, Delaware, and the greater New York City Area.