Abstract
Introduction Traditional survey-based surveillance is costly, limited in its ability to distinguish diabetes types and time-consuming, resulting in reporting delays. The Diabetes in Children, Adolescents and Young Adults (DiCAYA) Network seeks to advance diabetes surveillance efforts in youth and young adults through the use of large-volume electronic health record (EHR) data. The network has two primary aims, namely: (1) to refine and validate EHR-based computable phenotype algorithms for accurate identification of type 1 and type 2 diabetes among youth and young adults and (2) to estimate the incidence and prevalence of type 1 and type 2 diabetes among youth and young adults and trends therein. The network aims to augment diabetes surveillance capacity in the USA and assess performance of EHR-based surveillance. This paper describes the DiCAYA Network and how these aims will be achieved. Methods and analysis The DiCAYA Network is spread across eight geographically diverse US-based centres and a coordinating centre. Three centres conduct diabetes surveillance in youth aged 0-17 years only (component A), three centres conduct surveillance in young adults aged 18-44 years only (component B) and two centres conduct surveillance in components A and B. The network will assess the validity of computable phenotype definitions to determine diabetes status and type based on sensitivity, specificity, positive predictive value and negative predictive value of the phenotypes against the gold standard of manually abstracted medical charts. Prevalence and incidence rates will be presented as unadjusted estimates and as race/ethnicity, sex and age-adjusted estimates using Poisson regression. Ethics and dissemination The DiCAYA Network is well positioned to advance diabetes surveillance methods. The network will disseminate EHR-based surveillance methodology that can be broadly adopted and will report diabetes prevalence and incidence for key demographic subgroups of youth and young adults in a large set of regions across the USA.
| Original language | English (US) |
|---|---|
| Article number | e073791 |
| Journal | BMJ open |
| Volume | 14 |
| Issue number | 1 |
| DOIs | |
| State | Published - Jan 17 2024 |
Funding
The research reported in this publication was conducted using data from the DiCAYA (Assessing the Burden of Diabetes by Type in Children, Adolescents, and Young Adults) Network. DiCAYA is funded by the Centers for Disease Control and Prevention (CDC) (DP20-001) and the National Institute of Diabetes and Digestive and Kidney Diseases to modernize diabetes surveillance efforts using electronic health record data and advanced statistical analysis. This study includes data from the following institutions: University of South Carolina, University of Colorado Denver, Children’s Hospital of Philadelphia, University of Florida, Lurie Children’s Hospital, Kaiser Permanente Southern California, Geisinger, and Indiana University-Purdue University Indianapolis. The research reported in this study was also conducted using PEDSnet and the OneFlorida+ Clinical Research Network and several other clinical research networks in the project led by Lurie Children’s Hospital. PEDSnet, A Pediatric Learning Health System, includes data from the following PEDSnet institutions: Children’s Hospital Colorado, Children’s Hospital of Philadelphia, Cincinnati Children’s Hospital Medical Center, Lurie Children’s Hospital, Nationwide Children’s Hospital, Nemours Children’s Health, and Seattle Children’s Hospital. PEDSnet is a Partner Network Clinical Data Research Network in PCORnet, the National Patient-Centered Clinical Research Network, an initiative funded by the Patient-Centered Outcomes Research Institute (PCORI). OneFlorida+ is a collaboration among researchers, clinicians and patients in Florida, Georgia, and Alabama to create an enduring infrastructure for a wide range of health research, including pragmatic clinical trials, comparative effectiveness research, implementation science studies, observational research, and cohort discovery. Network partners include the University of Florida, Florida State University, the University of Miami, the University of South Florida, Emory University in Atlanta, and the University of Alabama at Birmingham, along with the six universities’ affiliated health systems and practices. Other partners include AdventHealth (Orlando), Tallahassee Memorial HealthCare, Tampa General Hospital, Bond Community Health (Tallahassee), Community Health IT (Kennedy Space Center), Nicklaus Children’s Hospital (Miami), Capital Health Plan (Tallahassee), Bendcare (Boca Raton, Florida) and the Florida Agency for Health Care Administration, which oversees the Florida Medicaid Program. OneFlorida+ is also a network partner of PCORnet. The Lurie Children’s Hospital DiCAYA project is composed of health care institutions from multiple clinical research networks: The INSIGHT Clinical Research Network (CRN) is a collaborative initiative which integrates clinical and social determinants of health data from over 15 million patients within New York City’s leading health systems. As a member of PCORI’s PCORnet, INSIGHT operates as one of the largest and most diverse CRNs. The INSIGHT network infrastructure is built to convene and meaningfully engage with patients, caregivers, families, researchers, health system leaders, clinicians, and funders to ensure a universal focus on patient-centered research and health equity. This work is supported in-part by the PCORI PCORnet grant to the INSIGHT Clinical Research Network (grant # RI-CORNELL-01-MC). The approach described in this manuscript was developed in partnership with Research Action for Health Network (REACHnet), funded by PCORI (PCORI Award RI-LPHI-01-MC). REACHnet is a partner network in PCORnet, which was developed with funding from PCORI. The Accelerating Data Value Across a National Community Health Center Network (ADVANCE) Clinical Research Network is a member of PCORnet. ADVANCE is a multicenter collaborative led by OCHIN (not an acronym) in partnership with Fenway Health, Health Choice Network, and Oregon Health & Science University. The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) is a partnership between healthcare and research institutions, patients, patient advocates, clinicians, community-based organisations (CBOs), and non-profits committed to enabling and delivering patient-centered clinical research. A Patient Community Advisory Committee (PCAC) has worked with CAPriCORN since its inception to elevate the patient voice in research. CAPriCORN’s mission is to develop, test, and implement clinical research in order to improve health care quality, health outcomes, and health equity for the diverse populations of Chicagoland and the surrounding states. Johns Hopkins is a member site of the PaTH CRN. PaTH is a Partner Network in PCORnet, the National Patient-Centered Clinical Research Network. PCORnet has been developed with funding from the Patient-Centered Outcomes Research Institute (PCORI). PaTH’s participation in PCORnet was funded through PCORI Award (RI-PITT-01-PS1). This work was supported by the Centers for Disease Control and Prevention and the National Institute for Diabetes and Digestive and Kidney Diseases. U18DP006521 Children’s Hospital of Pennsylvania, U18DP006512 University of Florida, U18DP006509 Geisinger, U18DP006500 Indiana University–Purdue University at Indianapolis, U18DP006513 University of South Carolina, U18DP006506 Kaiser Foundation Hospitals, U18DP006693 Lurie Children’s, U18DP006694 Lurie Children’s, U18DP006517 University of Colorado Component-A, U18DP006518 University of Colorado Component-B, U18DP006510 NYU Long Island School of Medicine.
Keywords
- adolescent
- diabetes & endocrinology
- epidemiology
- health informatics
- paediatric endocrinology
ASJC Scopus subject areas
- General Medicine
