A collaborative comparison of international pediatric diabetes registries
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A collaborative comparison of international pediatric diabetes registries. / Lanzinger, Stefanie; Australasian Diabetes Data Network (ADDN), Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids), Diabetes prospective follow-up registry (DPV), Norwegian Childhood Diabetes Registry (NCDR), National Paediatric Diabetes Audit (NPDA), Swedish Childhood Diabetes Registry (Swediabkids), T1D Exchange Quality Improvement Collaborative (T1DX-QI), and SWEET initiative.
I: Pediatric Diabetes, Bind 23, Nr. 6, 2022, s. 627-640.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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TY - JOUR
T1 - A collaborative comparison of international pediatric diabetes registries
AU - Lanzinger, Stefanie
AU - Zimmermann, Anthony
AU - Ranjan, Ajenthen G.
AU - Gani, Osman
AU - Pons Perez, Saira
AU - Akesson, Karin
AU - Majidi, Shideh
AU - Witsch, Michael
AU - Hofer, Sabine
AU - Johnson, Stephanie
AU - Pilgaard, Kasper A.
AU - Kummernes, Siv Janne
AU - Robinson, Holly
AU - Eeg-Olofsson, Katarina
AU - Ebekozien, Osagie
AU - Holl, Reinhard W.
AU - Svensson, Jannet
AU - Skrivarhaug, Torild
AU - Warner, Justin
AU - Craig, Maria E.
AU - Maahs, David
AU - Australasian Diabetes Data Network (ADDN), Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids), Diabetes prospective follow-up registry (DPV), Norwegian Childhood Diabetes Registry (NCDR), National Paediatric Diabetes Audit (NPDA), Swedish
N1 - Publisher Copyright: © 2022 The Authors. Pediatric Diabetes published by John Wiley & Sons Ltd.
PY - 2022
Y1 - 2022
N2 - Background: An estimated 1.1 million children and adolescents aged under 20 years have type 1 diabetes worldwide. Principal investigators from seven well-established longitudinal pediatric diabetes registries and the SWEET initiative have come together to provide an international collaborative perspective and comparison of the registries. Work Flow: Information and data including registry characteristics, pediatric participant clinical characteristics, data availability and data completeness from the Australasian Diabetes Data Network (ADDN), Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids), Diabetes prospective follow-up registry (DPV), Norwegian Childhood Diabetes Registry (NCDR), National Paediatric Diabetes Audit (NPDA), Swedish Childhood Diabetes Registry (Swediabkids), T1D Exchange Quality Improvement Collaborative (T1DX-QI), and the SWEET initiative was extracted up until 31 December 2020. Registry Objectives and Outcomes: The seven diabetes registries and the SWEET initiative collectively show data of more than 900 centers and around 100,000 pediatric patients, the majority with type 1 diabetes. All share the common objectives of monitoring treatment and longitudinal outcomes, promoting quality improvement and equality in diabetes care and enabling clinical research. All generate regular benchmark reports. Main differences were observed in the definition of the pediatric population, the inclusion of adults, documentation of CGM metrics and collection of raw data files as well as linkage to other data sources. The open benchmarking and access to regularly updated data may prove to be the most important contribution from registries. This study describes aspects of the registries to enable future collaborations and to encourage the development of new registries where they do not exist.
AB - Background: An estimated 1.1 million children and adolescents aged under 20 years have type 1 diabetes worldwide. Principal investigators from seven well-established longitudinal pediatric diabetes registries and the SWEET initiative have come together to provide an international collaborative perspective and comparison of the registries. Work Flow: Information and data including registry characteristics, pediatric participant clinical characteristics, data availability and data completeness from the Australasian Diabetes Data Network (ADDN), Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids), Diabetes prospective follow-up registry (DPV), Norwegian Childhood Diabetes Registry (NCDR), National Paediatric Diabetes Audit (NPDA), Swedish Childhood Diabetes Registry (Swediabkids), T1D Exchange Quality Improvement Collaborative (T1DX-QI), and the SWEET initiative was extracted up until 31 December 2020. Registry Objectives and Outcomes: The seven diabetes registries and the SWEET initiative collectively show data of more than 900 centers and around 100,000 pediatric patients, the majority with type 1 diabetes. All share the common objectives of monitoring treatment and longitudinal outcomes, promoting quality improvement and equality in diabetes care and enabling clinical research. All generate regular benchmark reports. Main differences were observed in the definition of the pediatric population, the inclusion of adults, documentation of CGM metrics and collection of raw data files as well as linkage to other data sources. The open benchmarking and access to regularly updated data may prove to be the most important contribution from registries. This study describes aspects of the registries to enable future collaborations and to encourage the development of new registries where they do not exist.
KW - benchmarking
KW - diabetes mellitus
KW - network
KW - quality improvement
KW - registry
U2 - 10.1111/pedi.13362
DO - 10.1111/pedi.13362
M3 - Journal article
C2 - 35561091
AN - SCOPUS:85133291636
VL - 23
SP - 627
EP - 640
JO - Pediatric Diabetes
JF - Pediatric Diabetes
SN - 1399-543X
IS - 6
ER -
ID: 325966185