BMJ Open (Jan 2024)
Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network
- Hui Zhou,
- Manmohan Kamboj,
- Yi Guo,
- Angela D Liese,
- Rebecca Anthopolos,
- Lu Zhang,
- John Chang,
- Anna Roberts,
- Tessa Crume,
- Brian E Dixon,
- Hui Shao,
- David C Lee,
- Lorna E Thorpe,
- Dimitri Christakis,
- Eneida A Mendonca,
- Katie Allen,
- Dana Dabelea,
- Giuseppina Imperatore,
- Mark Weiner,
- Meredith Akerman,
- Rong Wei,
- Kristi Reynolds,
- Annemarie G Hirsch,
- Jasmin Divers,
- Tianchen Lyu,
- Alex Ewing,
- Shaun Grannis,
- Yuan Luo,
- Bo Cai,
- Anthony Wong,
- Brian S Schwartz,
- Meda Pavkov,
- Meredith Lewis,
- Sarah Conderino,
- Jiang Bian,
- Yonghui Wu,
- Jihad S Obeid,
- Harold P Lehmann,
- Charles Bailey,
- Theresa Anderson,
- Elizabeth A Shenkman,
- Elizabeth Nauman,
- Christopher Forrest,
- Mattia Prosperi,
- Seho Park,
- Cara M Nordberg,
- Tessa L Crume,
- Anna Bellatorre,
- Stefanie Bendik,
- Marc Rosenman,
- Levon Utidjian,
- Mitch Maltenfort,
- Amy Shah,
- G Todd Alonso,
- Sara Deakyne-Davies,
- Tim Bunnell,
- Anne Kazak,
- Melody Kitzmiller,
- Daksha Ranade,
- Joseph J DeWalle,
- H Lester Kirchner,
- Dione G Mercer,
- Amy Poissant,
- Nimish Valvi,
- Jeff Warvel,
- Ashley Wiensch,
- Tamara Hannon,
- Eva Lustigova,
- Don McCarthy,
- Matthew T Mefford,
- George Lales,
- Allison Zelinski,
- Pedro Rivera,
- Thomas Carton,
- Victor W Zhong,
- Andrew Fair,
- Jessica Guillaume,
- Shahidul Islam,
- Alan Jacobson,
- Chinyere Okpara,
- Anand Rajan,
- Andrea Titus,
- Rebecca Conway,
- Toan Ong,
- Jack Pattee,
- Shawna Burgett,
- Bethlehem Shiferaw,
- Sarah J Bost,
- William T Donahoo,
- William R Hogan,
- Piaopiao Li,
- Lisa Knight,
- Caroline Rudisill,
- Jessica Stucker,
- Deborah Bowlby,
- Elaine Apperson,
- Deborah B Rolka
Affiliations
- Hui Zhou
- Manmohan Kamboj
- Yi Guo
- Department of Health Outcomes and Biomedical Informatics, University of Florida, Gainesville, Florida, USA
- Angela D Liese
- Department of Epidemiology and Biostatistics, University of South Carolina, Columbia, South Carolina, USA
- Rebecca Anthopolos
- 2 Population Health, New York University School of Medicine, New York, New York, USA
- Lu Zhang
- Lower Genital Tract Disease Center, Obstetrics and Gynecology Hospital of Fudan University, Shanghai, Shanghai, China
- John Chang
- Anna Roberts
- Tessa Crume
- Brian E Dixon
- Department of Epidemiology, Fairbanks School of Public Health, Indiana University, Indianapolis, Indiana, USA
- Hui Shao
- Department of Pharmaceutical Outcomes and Policy, University of Florida College of Pharmacy, Gainesville, Florida, USA
- David C Lee
- 1 Emergency Medicine, New York University School of Medicine, New York, New York, USA
- Lorna E Thorpe
- 2 Population Health, New York University School of Medicine, New York, New York, USA
- Dimitri Christakis
- Eneida A Mendonca
- Katie Allen
- Dana Dabelea
- Giuseppina Imperatore
- Division of Diabetes Translation, Centers for Disease Control and Prevention, Atlanta, Georgia, USA
- Mark Weiner
- Meredith Akerman
- Rong Wei
- Kristi Reynolds
- Departmnt of Research & Evaluation, Kaiser Permanente Southern California, Pasadena, California, USA
- Annemarie G Hirsch
- Department of Population Health Sciences, Geisinger, Danville, Pennsylvania, USA
- Jasmin Divers
- Department of Foundations of Medicine, New York University Long Island School of Medicine, Mineola, New York, USA
- Tianchen Lyu
- Alex Ewing
- Shaun Grannis
- Yuan Luo
- Bo Cai
- Anthony Wong
- Brian S Schwartz
- Meda Pavkov
- Meredith Lewis
- Sarah Conderino
- Department of Population Health, New York University Grossman School of Medicine, New York, New York, USA
- Jiang Bian
- Yonghui Wu
- Jihad S Obeid
- Harold P Lehmann
- Charles Bailey
- Theresa Anderson
- Elizabeth A Shenkman
- Elizabeth Nauman
- Christopher Forrest
- Mattia Prosperi
- Seho Park
- Cara M Nordberg
- Tessa L Crume
- Department of Epidemiology, Lifecourse Epidemiology of Adiposity and Diabetes (LEAD), University of Colorado - Anschutz Medical Campus, Aurora, Colorado, USA
- Anna Bellatorre
- Department of Epidemiology, Lifecourse Epidemiology of Adiposity and Diabetes (LEAD), University of Colorado - Anschutz Medical Campus, Aurora, Colorado, USA
- Stefanie Bendik
- Department of Population Health, New York University Grossman School of Medicine, New York, New York, USA
- Marc Rosenman
- Department of Pediatrics, Ann & Robert H. Lurie Children`s Hospital of Chicago, and Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA
- Levon Utidjian
- Department of Biomedical and Health Informatics, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
- Mitch Maltenfort
- Amy Shah
- G Todd Alonso
- Sara Deakyne-Davies
- Tim Bunnell
- Anne Kazak
- Melody Kitzmiller
- Daksha Ranade
- Joseph J DeWalle
- H Lester Kirchner
- Dione G Mercer
- Amy Poissant
- Nimish Valvi
- Jeff Warvel
- Ashley Wiensch
- Tamara Hannon
- Eva Lustigova
- Don McCarthy
- Matthew T Mefford
- George Lales
- Allison Zelinski
- Pedro Rivera
- Thomas Carton
- Victor W Zhong
- Andrew Fair
- Jessica Guillaume
- Shahidul Islam
- Alan Jacobson
- Chinyere Okpara
- Anand Rajan
- Andrea Titus
- Rebecca Conway
- Toan Ong
- Jack Pattee
- Shawna Burgett
- Bethlehem Shiferaw
- Sarah J Bost
- William T Donahoo
- William R Hogan
- Piaopiao Li
- Lisa Knight
- Caroline Rudisill
- Jessica Stucker
- Deborah Bowlby
- Elaine Apperson
- Deborah B Rolka
- DOI
- https://doi.org/10.1136/bmjopen-2023-073791
- Journal volume & issue
-
Vol. 14,
no. 1
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.
