# Multisite Electronic Health Record-based Surveillance of the Burden of Diabetes by Type in Children and Adolescents

> **NIH ALLCDC U18** · CORNELL UNIVERSITY · 2020 · $250,000

## Abstract

Diabetes is a common chronic disease in children and adolescents under age of 18 years. In the recent two
decades, both the prevalence and incidence of type 1 diabetes (T1D) and type 2 diabetes (T2D) have been
increasing considerably among US children and adolescents. T2D now accounts for ~15% of diabetes cases
diagnosed in childhood and adolescence. The SEARCH for Diabetes in Youth study is the only ongoing
multisite surveillance study of T1D and T2D in US children and adolescents. The SEARCH study is a
population-based registry, which is a more expensive, more labor-intensive, and slower surveillance method
compared with a surveillance system using electronic health records (EHRs). EHR algorithms have shown
great potential in identifying diabetes cases. This study will analyze both structured EHR data (e.g., diagnosis
codes, medications, and laboratory results) and unstructured clinical notes. We will apply expert knowledge,
machine learning, and natural language processing to develop the best algorithms for identifying prevalent and
incident T1D and T2D cases. The primary objective of this study is to establish an EHR-based surveillance
system for monitoring the burden of T1D and T2D in US children and adolescents. We will collaborate with 3
EHR research networks from the National Patient-Centered Clinical Research Network (PCORnet), covering
~3 million racially, ethnically, and socioeconomically diverse children and adolescents from 4 states (IL, LA,
NY, and TX) in 3 Census regions. The patient populations in this study are roughly representative of the source
populations in the catchment areas. The specific aims of this study are 1) to estimate the prevalence of T1D
and T2D in US children and adolescents by age, sex, race/ethnicity, and geographic region in 2019; 2) to
estimate the incidence of T1D and T2D in US children and adolescents by age, sex, race/ethnicity, and
geographic region in 2019; 3) to estimate 10-year trends in the prevalence and incidence of T1D and T2D in
US children and adolescents by age, sex, race/ethnicity, and geographic region, 2014-2023; and 4) to compare
the prevalence and incidence of diabetes by type, as well as temporal trends, in US children and adolescents
with those in children and adolescents from other countries and regions. This study is innovative because it will
leverage EHRs for surveillance (more efficient and cost-effective than registries and surveys), use advanced
statistical approaches (e.g., machine learning and natural language processing), estimate a denominator using
patient zip codes, build flexibility into the surveillance methods according to local availability of clinical notes,
and use a 2-staged sampling approach to improve chart review efficiency. All 4 states in this study do not have
an active diabetes surveillance system for children and adolescents and are not covered by the SEARCH
study. This study will advance our understanding of the geographic, age, sex, and racial/ethnic differe...

## Key facts

- **NIH application ID:** 10085447
- **Project number:** 1U18DP006503-01
- **Recipient organization:** CORNELL UNIVERSITY
- **Principal Investigator:** Wenze Zhong
- **Activity code:** U18 (R01, R21, SBIR, etc.)
- **Funding institute:** ALLCDC
- **Fiscal year:** 2020
- **Award amount:** $250,000
- **Award type:** 1
- **Project period:** 2020-09-30 → 2025-09-29

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10085447

## Citation

> US National Institutes of Health, RePORTER application 10085447, Multisite Electronic Health Record-based Surveillance of the Burden of Diabetes by Type in Children and Adolescents (1U18DP006503-01). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10085447. Licensed CC0.

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