Abstract

Introduction: West Virginia exhibits pervasive cardiovascular disease (CVD) that may relate to a combination of ancestry and shared environment in families, including vulnerabilities related to diet, physical activity and tobacco use. Coronary Artery Risk Detection in Appalachian Communities (CARDIAC) is a school-based child risk factor screening program that has evaluated over 90,000 WV fifth graders in the past 20 years. Reverse Cascade screening for Familial Hypercholesterolemia (FH) has been difficult with the CARDIAC population. The WVU CTSI Integrated Data Repository (IDR) includes over 2 million records. Hypothesis: Linkage of child CARDIAC data to parent IDR data will allow new information discovery to inform management of CVD. Methods: We used direct demographic data linkage via Oracle with Soundex conversion of names, in the IDR, to find parents of the CARDIAC participants. Data was analyzed in the VMWare SSL environment. Results: 4759 children have a parent(s) identified. 959 mothers and 524 fathers have an LDL level from IDR. Race, BMI and gender was recorded from CARDIAC. 6.8 % of children, 40% of mothers and 44.8% of fathers have an abnormal LDL level >130 mg/dl in IDR. Positive predictive value of the abnormal child lipid level (≥130 mg/dl) is 17% for some parent (56/325) to be abnormal. 4 parents had LDL >190 mg/dl with child > 160, indicating likely FH in the pair (2.7% of pairs or 1 in 371 pairs). Conclusion: Formation of a virtual cohort of CARDIAC children and parents allows Virtual Reverse Cascade Screening to find FH. This project highlights the importance of familial tendency to hyperlipidemia that can aid detection of early lipid abnormality and cardiovascular risk in children and their young parents to promote wellness and potentially avoid early coronary artery disease. We are constructing a virtual longitudinal cohort to study CVD in WV as a part of a Learning Health System in which data management is at the forefront of healthcare improvement.

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