NYU Langone Health Coordinating Center for CASSIDY (NYU CoC)

Abstract Diabetes and its related complications are major causes of morbidity among youth and young adults in the US. The Assessing the Burden of Diabetes by Type in Children, Adolescents, and Young Adults (DiCAYA) Network was funded to develop new methodologies for diabetes surveillance using electronic health record (EHR) data. We served as DiCAYA’s Coordinating Center (CoC) for eight sites across the country. Together, we developed and validated computable phenotypes (CPs) to identify diabetes cases, type, and incidence in youth and young adults. Before DiCAYA, this work had yet to be done on such a large scale. Informed by the experience of DiCAYA, we are in an even stronger position to provide the leadership, expertise, and infrastructure needed to support and guide the CASSIDY Network. As the Component B site, we offer the expertise and support services required in statistics, diabetes epidemiology, clinical informatics, natural language processing, geographic information systems (GISs), and project and data management. As the NYU Coordinating Center (NYU CoC) for CASSIDY, we will provide the infrastructure and expertise to guide development and validation of harmonized and standardized surveillance measures and develop analytical methods to provide unbiased estimates of diabetes trends among individuals 44 or younger. Specifically, the NYU CoC aims to: 1) develop and maintain a central data repository and provide the infrastructure for secure transmission and management of data; 2) develop and maintain a study website for data entry and dissemination of information among study investigators and to the public; 3) provide required training for clinical staff and facilitate their interaction with study materials, documentation, and data collection; 4) provide expertise and leadership in developing, implementing, and evaluating a network of surveillance systems designed for population-based estimation; 5) provide statistical, epidemiologic, and analytic expertise and support for all aspects of the study; and 6) support the timely dissemination of study results. The NYU CoC leadership has significant experience leading multi- center studies and data coordinating centers, as well as specific expertise in designing surveillance systems based on electronic health records (EHRs) that integrate sound epidemiologic and study design principles to ensure completeness, appropriate representativeness, and generalizability of results. With this combination of skills, the NYU CoC is poised to deliver an unrivaled system for surveillance of diabetes in youth and young adults that provides accurate, representative, timely, and stable data over time to help determine trends in the incidence, prevalence, and clinical characteristics of both type 1 and type 2 diabetes among youth and young adults across the United States, ultimately informing public health interventions and reducing the burden of diabetes in these populations.