Clinical Center for Cholestatic Liver Disease in Children

Cincinnati Childrens Hosp Med Ctr, Cincinnati OH

Investigators

Linked publications & trials

Abstract

PROJECT SUMMARY/ABSTRACT We propose to recruit Dr. Cyd Castro-Rojas as Clinical Research Coordinator (CRC) to the multicenter Childhood Liver Disease Research Network (ChiLDReN) to broaden the research workforce for this program and improve enrollment and retention of all populations affected by the cholestatic liver disease, i.e. extrahepatic biliary atresia (EHBA), primary sclerosing cholangitis (PSC), or Alagille syndrome, into the ChiLDReN longitudinal study protocols. Preliminary published data indicate that racial, ethnic, and socioeconomic disparities impact timely diagnosis and access to biliary drainage surgery in EHBA and natural history in PSC. Therefore, it is important that natural history studies on these conditions adequately represent all populations at risk. Using enrollment and retention logs for ChiLDReN studies and electronic health records for patients cared for in Cincinnati, we discovered trends for decreased enrollment of Black and Asian infants with EHBA into the PROBE and BASIC protocols and lower retention rates for Blacks and patients with EHBA of Hispanic ethnicity in the PROBE study. We hypothesize that broadening the research staff for ChiLDReN will allow us to successfully implement strategies to improve recruitment and retention of study participants from a diverse racial, ethnic, and socioeconomic background into ChiLDReN protocols. Dr. Castro-Rojas will broaden the clinical research workforce and improve the enrollment and retention of study participants from diverse backgrounds into the ChiLDReN protocols by 20%. She will lead improvement efforts for the ChiLDReN research program at Cincinnati, including building relations with Black, Hispanic, and socioeconomically disadvantaged communities through the Research Participant Advisory Group. Dr. Castro- Rojas will seek the advisory group’s guidance in editing study documents to make those more approachable for all populations and in identifying strategies to remove barriers to research activities by participants at risk. She will take a 12-credit course at the University of Cincinnati to obtain the Graduate Certificate in Community- Engaged Research for Health and apply the learnings to the improvement efforts for the ChiLDReN network. Additionally, she will take targeted training through the Association of Clinical Research Professionals and the CITI Program to learn about best practices and strategies for recruiting and retaining participants from diverse communities. Furthermore, Dr. Castro-Rojas will disseminate insights into successful research improvement efforts to reduce disparities in observational studies with other ChiLDReN sites and across NIDDK-supported studies at Cincinnati.