Establishing a Nationwide Diabetes Surveillance System for Youth and Young Adults: Incidence, Prevalence, Risk Factors, Disparities, and Social Determinants of Health

Project Summary Alarming increases in both type 1 and type 2 diabetes have been observed among youth in the United States over the past decade. There is an urgent need for a comprehensive surveillance system to monitor the prevalence, incidence, and complications of diabetes among youth and young adults, while evaluating disparities and contributing factors. However, national surveys lack sufficient data on youth and young adults to support rigorous diabetes surveillance. The recent development of the EPIC COSMOS database—which includes EHR records from over 289 million unique individuals, encompassing more than 60% of U.S. residents across all 50 states—offers an unprecedented opportunity to build a nationwide young-onset diabetes surveillance system. The rich data elements within COSMOS—including demographics, biomarkers, diagnoses, prescriptions, and social determinants of health—allow for accurate identification of diabetes cases and examine disparities in risk factors, complications, and medication use in diabetes. Given our strong experience as a leading user of the COSMOS network, we propose to develop a nationwide diabetes surveillance system based on this database, in response to CASSIDY’s RFA (Component A). The detailed aims are as follows: Aim 1: Refine the DiCAYA CP algorithms for automated identification of prevalent and incident cases of type 1 and type 2 diabetes among youth and young adults. Aim 2: Estimate the prevalence and incidence of type 1 and type 2 diabetes. Aim 3: Assess the risk factors for diabetes complications, the onset of acute and chronic complications, and the use of diabetes medications among youth and young adults with diabetes. Dissemination: We will work closely with the CDC and coordinating center to (1) adopt a CDM for data analysis and sharing across centers, and (2) disseminate study results through EPIC stakeholders and nationally by contributing to the CDC’s National Diabetes Statistical Report and high-impact scientific publications.