SEARCH Registry Expansion

September 2019 Council

Lead Division/Office


Point(s) of Contact

Barbara Linder, M.D., Ph.D.

Executive Summary

The SEARCH for Diabetes in Youth Study was established in 2000 as a joint project between CDC and NIDDK to conduct population-based surveillance of diabetes in youth (individuals <20 years of age). SEARCH provides the only such data in the U.S., as national surveys (e.g., NHANES) only cover adults. While the population under surveillance in SEARCH closely matches the U.S. population for many key demographic characteristics (e.g., age, gender, overall race/ethnicity, parental education), with only five sites, geographic coverage is limited. In addition, SEARCH has good coverage of Mexican Americans but not of many other key Hispanic American populations; studies in adults suggest that the Hispanic population is heterogenous in diabetes rates. While national surveys provide diabetes data in the U.S. adult population, these surveys cannot distinguish between type 1 and type 2 diabetes. There is emerging data that the incidence of type 1 diabetes is more common in young adults than previously appreciated and that type 1 diabetes is often misdiagnosed as type 2 diabetes in young adults, potentially leading to acute hyperglycemic crises. Ongoing surveillance of diabetes is necessary to determine trends in incidence and prevalence and provide data to inform healthcare policy and diabetes prevention efforts. The current SEARCH funding period ends September 2020. This initiative would continue the collaboration between NIDDK and CDC and create an expanded childhood diabetes registry. The goal is to increase the number of sites to have broader geographic and Hispanic and Asian representation, as well as to add sites that could conduct surveillance of young adults, an understudied population.