Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network
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 yo...
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| author | 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 |
| author_facet | 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 |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-8ca915a32dcd4ffdbd2dee2faf1c3e56 |
| institution | DOAJ |
| issn | 2044-6055 |
| language | English |
| publishDate | 2024-01-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-8ca915a32dcd4ffdbd2dee2faf1c3e562025-08-20T03:00:44ZengBMJ Publishing GroupBMJ Open2044-60552024-01-0114110.1136/bmjopen-2023-073791Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network Hui Zhou0Manmohan KambojYi Guo1Angela D Liese2Rebecca Anthopolos3Lu Zhang4John Chang5Anna RobertsTessa CrumeBrian E Dixon6Hui Shao7David C Lee8Lorna E Thorpe9Dimitri ChristakisEneida A MendoncaKatie AllenDana DabeleaGiuseppina Imperatore10Mark WeinerMeredith AkermanRong WeiKristi Reynolds11Annemarie G Hirsch12Jasmin Divers13Tianchen LyuAlex Ewing14Shaun GrannisYuan LuoBo CaiAnthony WongBrian S SchwartzMeda PavkovMeredith LewisSarah Conderino15Jiang BianYonghui WuJihad S ObeidHarold P LehmannCharles BaileyTheresa AndersonElizabeth A ShenkmanElizabeth NaumanChristopher ForrestMattia ProsperiSeho ParkCara M NordbergTessa L Crume16Anna Bellatorre17Stefanie Bendik18Marc Rosenman19Levon Utidjian20Mitch MaltenfortAmy ShahG Todd AlonsoSara Deakyne-DaviesTim BunnellAnne KazakMelody KitzmillerDaksha RanadeJoseph J DeWalleH Lester KirchnerDione G MercerAmy PoissantNimish ValviJeff WarvelAshley WienschTamara HannonEva LustigovaDon McCarthyMatthew T MeffordGeorge LalesAllison ZelinskiPedro RiveraThomas CartonVictor W ZhongAndrew FairJessica GuillaumeShahidul IslamAlan JacobsonChinyere OkparaAnand RajanAndrea TitusRebecca ConwayToan OngJack PatteeShawna BurgettBethlehem ShiferawSarah J BostWilliam T Donahoo21William R HoganPiaopiao LiLisa KnightCaroline RudisillJessica StuckerDeborah BowlbyElaine AppersonDeborah B Rolka16Innovent Biologics, Inc., Shanghai, ChinaDepartment of Health Outcomes and Biomedical Informatics, University of Florida, Gainesville, Florida, USADepartment of Epidemiology and Biostatistics, University of South Carolina, Columbia, South Carolina, USADepartment of Population Health, New York University Grossman School of Medicine, New York, New York, USA1Shanghai Cell Therapy Group Co. Ltd, Shanghai, ChinaResearch and Development, Croydon University Hospital, London, UKDepartment of Epidemiology, Fairbanks School of Public Health, Indiana University, Indianapolis, Indiana, USAChangping Laboratory, Beijing, ChinaDepartment of Population Health, New York University Grossman School of Medicine, New York, New York, USADepartment of Population Health, New York University Grossman School of Medicine, New York, New York, USADivision of Diabetes Translation, Centers for Disease Control and Prevention, Atlanta, Georgia, USADepartmnt of Research & Evaluation, Kaiser Permanente Southern California, Pasadena, California, USADepartment of Population Health Sciences, Geisinger, Danville, Pennsylvania, USADepartment of Foundations of Medicine, New York University Long Island School of Medicine, Mineola, New York, USA10 Data Support Core, Prisma Health, Greenville, South Carolina, USADepartment of Population Health, New York University Grossman School of Medicine, New York, New York, USADepartment of Epidemiology, Lifecourse Epidemiology of Adiposity and Diabetes (LEAD), University of Colorado - Anschutz Medical Campus, Aurora, Colorado, USADepartment of Epidemiology, Lifecourse Epidemiology of Adiposity and Diabetes (LEAD), University of Colorado - Anschutz Medical Campus, Aurora, Colorado, USADepartment of Population Health, New York University Grossman School of Medicine, New York, New York, USADepartment of Pediatrics, Ann & Robert H. Lurie Children`s Hospital of Chicago, and Northwestern University Feinberg School of Medicine, Chicago, Illinois, USADepartment of Biomedical and Health Informatics, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania, USAUniversity of Florida Diabetes Institute, Gainesville, Florida, USAIntroduction 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.https://bmjopen.bmj.com/content/14/1/e073791.full |
| spellingShingle | 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 Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network BMJ Open |
| title | Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network |
| title_full | Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network |
| title_fullStr | Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network |
| title_full_unstemmed | Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network |
| title_short | Using electronic health records to enhance surveillance of diabetes in children, adolescents and young adults: a study protocol for the DiCAYA Network |
| title_sort | using electronic health records to enhance surveillance of diabetes in children adolescents and young adults a study protocol for the dicaya network |
| url | https://bmjopen.bmj.com/content/14/1/e073791.full |
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