A collaborative comparison of international pediatric diabetes registries

Stefanie Lanzinger^{1

2}, Anthony Zimmermann³, Ajenthen G Ranjan^{4

5}, Osman Gani^{6

7}, Saira Pons Perez⁸, Karin Akesson^{9

10}, Shideh Majidi¹¹, Michael Witsch¹², Sabine Hofer¹³, Stephanie Johnson¹⁴, Kasper A Pilgaard^{15

16}, Siv Janne Kummernes^{6

7}, Holly Robinson⁸, Katarina Eeg-Olofsson^{17

18}, Osagie Ebekozien^{19

20}, Reinhard W Holl^{1

2}, Jannet Svensson^{15

16}, Torild Skrivarhaug^{21

22}, Justin Warner²³, Maria E Craig^{24

25

26}, David Maahs^{27

28}; 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

Affiliations

¹ Institute of Epidemiology and Medical Biometry, ZIBMT, University of Ulm, Germany.
² German Centre for Diabetes Research (DZD), München-Neuherberg, Germany.
³ Northern Adelaide Local Health Network, Adelaide, Australia.
⁴ Steno Diabetes Center Copenhagen, Gentofte, Denmark.
⁵ Danish Diabetes Academy, Odense, Denmark.
⁶ NORMENT, Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
⁷ Division of Mental Health and Addiction, Oslo University Hospital, Oslo, Norway.
⁸ Royal College of Paediatrics and Child Health, London, UK.
⁹ Department of Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden.
¹⁰ Department of Pediatrics, Ryhov County Hospital, Jönköping, Sweden.
¹¹ University of Colorado, Barbara Davis Center, Aurora, Colorado, USA.
¹² Department of Pediatrics DECCP, Centre Hospitalier de Luxembourg, Luxembourg, Luxembourg.
¹³ Department of Pediatrics I, Medical University of Innsbruck, Innsbruck, Austria.
¹⁴ Queensland Children's Hospital, Brisbane, Australia.
¹⁵ Department of Pediatrics and Adolescents, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark.
¹⁶ Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
¹⁷ Swedish National Diabetes Register, Centre of Registers, Gothenburg, Sweden.
¹⁸ Department of Molecular and Clinical Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
¹⁹ T1D Exchange, Boston, Massachusetts, USA.
²⁰ University of Mississippi School of Population Health, Jackson, Mississippi, USA.
²¹ Division of Pediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
²² Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
²³ Children's Hospital for Wales, Cardiff, UK.
²⁴ Charles Perkins Centre Westmead, University of Sydney, Australia.
²⁵ The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
²⁶ University of NSW, Sydney, New South Wales, Australia.
²⁷ Division of Endocrinology, Department of Pediatrics, Stanford University, School of Medicine, Stanford, California, USA.
²⁸ Stanford Diabetes Research Center, Stanford, California, USA.

PMID: 35561091
DOI: 10.1111/pedi.13362

A collaborative comparison of international pediatric diabetes registries

Stefanie Lanzinger et al. Pediatr Diabetes. 2022 Sep.

. 2022 Sep;23(6):627-640.

doi: 10.1111/pedi.13362. Epub 2022 May 30.

Authors

Affiliations

¹ Institute of Epidemiology and Medical Biometry, ZIBMT, University of Ulm, Germany.
² German Centre for Diabetes Research (DZD), München-Neuherberg, Germany.
³ Northern Adelaide Local Health Network, Adelaide, Australia.
⁴ Steno Diabetes Center Copenhagen, Gentofte, Denmark.
⁵ Danish Diabetes Academy, Odense, Denmark.
⁶ NORMENT, Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
⁷ Division of Mental Health and Addiction, Oslo University Hospital, Oslo, Norway.
⁸ Royal College of Paediatrics and Child Health, London, UK.
⁹ Department of Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden.
¹⁰ Department of Pediatrics, Ryhov County Hospital, Jönköping, Sweden.
¹¹ University of Colorado, Barbara Davis Center, Aurora, Colorado, USA.
¹² Department of Pediatrics DECCP, Centre Hospitalier de Luxembourg, Luxembourg, Luxembourg.
¹³ Department of Pediatrics I, Medical University of Innsbruck, Innsbruck, Austria.
¹⁴ Queensland Children's Hospital, Brisbane, Australia.
¹⁵ Department of Pediatrics and Adolescents, Copenhagen University Hospital, Herlev and Gentofte, Herlev, Denmark.
¹⁶ Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
¹⁷ Swedish National Diabetes Register, Centre of Registers, Gothenburg, Sweden.
¹⁸ Department of Molecular and Clinical Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
¹⁹ T1D Exchange, Boston, Massachusetts, USA.
²⁰ University of Mississippi School of Population Health, Jackson, Mississippi, USA.
²¹ Division of Pediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
²² Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway.
²³ Children's Hospital for Wales, Cardiff, UK.
²⁴ Charles Perkins Centre Westmead, University of Sydney, Australia.
²⁵ The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
²⁶ University of NSW, Sydney, New South Wales, Australia.
²⁷ Division of Endocrinology, Department of Pediatrics, Stanford University, School of Medicine, Stanford, California, USA.
²⁸ Stanford Diabetes Research Center, Stanford, California, USA.

PMID: 35561091
DOI: 10.1111/pedi.13362

Abstract

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.

Keywords: benchmarking; diabetes mellitus; network; quality improvement; registry.

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References

REFERENCES

1. Diabetes Control and Complications Trial Research Group. The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. N Engl J Med. 1993;329:977-986.
1. International Diabetes Federation. IDF Diabetes Atlas. 9th ed. International Diabetes Federation; 2019:2019.
1. Saeedi P, Petersohn I, Salpea P, et al. Global and regional diabetes prevalence estimates for 2019 and projections for 2030 and 2045: results from the International Diabetes Federation Diabetes Atlas. Diabetes Res Clin Pract. 2019;157:107843.
1. Krans H, Porta M, Keen H. Diabetes Care and Research in Europe: the Saint Vincent Declaration Action Program. WHO, regional office for Europe; 1992.
1. Bak JC, Serné EH, Kramer MH, Nieuwdorp M, Verheugt CL. National diabetes registries: do they make a difference? Acta Diabetol. 2021;58:267-278.

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A collaborative comparison of international pediatric diabetes registries

Affiliations

A collaborative comparison of international pediatric diabetes registries

Authors

Affiliations

Abstract

References

REFERENCES

Publication types

MeSH terms

LinkOut - more resources

Full Text Sources

Medical