The Norwegian Childhood Diabetes Registry (NCDR)
and Biobank

Norwegian Childhood Diabetes Registry and Biobank. A nationwide population based registry with 98% ascertainment, sampling blood and standardized clinical data from the onset of diabetes in children < 18 years, and later annually until the age of 18 years. NCDR is increasing with more than 400 children with new-onset diabetes a year, including type 1 diabetes, type 2 diabetes, genetic diabetes and secondary diabetes. 

By following over 12000 patients with childhood-onset diabetes, we can identify changes in incidence and clinical status at onset. Vi also present changes in diabetes treatment, quality of care, prevalence of acute and late complications, quality of life. NCDR is a major contributor to different research projects.   

The main research focus in NCDR:     

  1. Epidemiology in childhood-onset diabetes, focusing on incidence, prevalence, classification of childhood-onset diabetes in Norway, genetics, ethnicity, long-term complications and mortality.

  2. Quality in childhood diabetes care – a nationwide prospective population-based study for research and quality improvement by means of benchmarking.       

  3. Clinical childhood diabetes, especially focusing on quality of life, diabetes treatment, co-morbidity, eating disorders and the transition from paediatric to adult diabetes care.

News from 2024:

  • The national annual mean HbA1c has been decreasing every year for the last thirteen years.

  • The proportion of children with HbA1c > 75 mmol/mol is 2%. It has decreased from 36% in 2009.  

Publications 2024:

  1. H. Hatle, T. Skrivarhaug, M. R. Bjørgaas, B. O. Åsvold, T. B. Rø

    Prevalence and associations of impaired awareness of hypoglycemia in a pediatric Type 1 diabetes population – The Norwegian Childhood Diabetes Registry

    Diabetes Research and Clinical Practice 2024 Jan 13:111093. IF: 8.18

     

  2. Lopez-Doriga Ruiz P, Tapia G, Bakken IJ, Håberg SE, Gulseth HL, Skrivarhaug T,  Joner G, Stene LC

    Parental education and occupation in relationship to childhood type 1 diabetes: nationwide cohort study

    Journal of Epidemiology and Community Health. 2024 Feb1. IF: 6.3

     

  3. Lund-Blix N.A., Bjerregaard A.A., Tapia G., Størdal K., Brantsæter A.L., Strøm M., Halldorsson T.I., Granstrøm C., Svennson J., Joner G., Skrivarhaug T., Njølstad P.R., Olsen S.F., Stene L. C.

    No association between long chain omega-3 fatty acid intake during pregnancy and risk of type 1 diabetes in the offspring: Two large Scandinavian pregnancy cohorts.

    Diabetologia. 2024 June;67(6):1023-1028. IF: 8.2

     

  4. Bratke H, Biringer E, Ushakova A, Margeirsdottir HD, Kummernes SJ, Njølstad PR, Skrivarhaug T

    Ten years of improving glycemic control in pediatric diabetes care: Data from the Norwegian Childhood Diabetes Registry.

    Diabetes Care. 2024 July 1;47(7):1122-1130. IF: 14.8.

     

  5. Zimmermann A.T, Lanzinger S, Kummernes S.J, Lund-Blix N.A, Holl R.W, Frolich-Reiterer E, Maahs D.M, Ebekozien O, Rompicherla S, Warner J.T, Perez A-P, Robinson H, Craig M.E, Johnson S, Akesson K, Thoren A, Eeg-Olofsson K, Ranjan A.G, Madsen M, Wisch M, Bratke H, Alonso T, Sumnik Z, Neuman V, Cinek O, Skrivarhaug T*, Svensson* (2024) *Joint senior /last authors.

    Treatment regimens and glycemic outcomes in more than 100,000 children with type 1 diabetes(2013-22): a longitudinal analysis of data from paediatric diabetes registries. 

    The Lancet Diabetes & Endocrinology 2024 Nov 29 Epub. IF: 44.0

Primary Investigator:

Co-investigators/participants:  

  • Geir Joner, Senior professor, MD, PhD

  • Knut Dahl-Jørgensen, Senior professor, MD, PhD

  • Kristian f. Hanssen, Senior professor, MD, PhD

  • Pål R. Njølstad, Prof., MD, PhD, University of Bergen, Haukeland University Hospital

  • Lars C. Stene, Lars Christian Stene, PhD, senior researcher, Norwegian Institute for Public Health

  • Siv Janne Kummernes, RN, MSc

  • Nicolai A. Lund-Blix, PhD

  • Hanna Dis Margeirsdottir, MD, PhD

  • Maryam Saeed, MD, PhD student

  • Håvard Hatle, MD, PhD student

  • Heiko Bratke, MD, PhD student

  • Line Wisting, PhD, senior researcher

  • Per M. Thorsby, Ass. Professor, MD, PhD

  • Nina Gjerlaugsen, MSc

  • Egil Midtlyng, psykolog

  • Kristin Andersen Bakke, MD

  • Kristin Namtvedt Tuv, MD

External collaborators

  • Jannet Svensson, Prof., MD, PhD, Dep. Pediatrics, Herlev University Hospital, Denmark   

  • Karin Åkeson, MD, PhD, Dep. Pediatrics, Jønkøbing Hospital, Sweden

  • Ragnar Bjarnason, Prof., MD, PhD, Dep. Pediatrics, Landspitali University Hospital, Iceland

  • Hilde Hestad Iversen, PhD, Norwegian Institute of Public Health

  • Ragnar Hanås, Prof. Dr. med, Department of Paediatrics, NU Hospital Group, Uddevalla, weden and the Sahlgrenska Academy, Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden

  • Reinhard Holl, Prof. Dr. med. Institut für Epidemiologie und medizinische Biometrie, Universitaet Ulm, Ulm, Germany

  • Stefanie Lanzinger, Institut für Epidemiologie und medizinische Biometrie, Universitaet Ulm, Ulm, Germany