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 2022: An increasing number of children and adolescents are diagnosed with diabetes in 2022.

Publications 2022: J Svensson, E.H. Ibfelt , Carstensen, A. Neu, O. Cinek, T. Skrivarhaug, B. Rami-Merhar, R.G. Feltbower, C. Castell, D. Konrad, K. Gillespie, P. Jarosz-Chobot, D. Marčiulionytė, J. Rosenbauer, N. Bratina, C. Ionescu-Tirgoviste, F. Gorus , M. Kocova, C.E. de Beaufort, C.C. Patterson (2022) Age-period-cohort modelling of Type 1 diabetes incidence rates among children included in the EURODIAB 25-year follow-up study. Acta Diabetologica 2022 Oct 7. PMID:36205797.IF:4.28

Niels H Birkebaek, Clemens Kamrath, Julia M Grimsmann, Karin Akesson, Klemen Dovc, Carine de Beaufort, Aveni Haynes, Torild Skrivarhaug, Mary White, Craig Jefferies, Martin De Bock, Zdenek Sumnik, Jannet Svensson, Justin T Warner, John W Gregory, Valentino Cherubini, Osman Gani, Thomas Hörtenhuber, Rosaria Gesuita, Riccardo Schiaffini, Ragnar Hanas, Reinhard W Holl, Ondrej Cinek (2022) Long-term trends in the frequency of diabetic ketoacidosis at onset of paediatric type 1 diabetes and impact of the COVID-19 pandemic in 2020 and 2021 – An international multicentre study using 13 national diabetes registries from three continents. Lancet Diabetes and Endocrinology Oct. 2022. IF: 44.867

Lanzinger S, Zimmermann A, Ranjan AG, Gani O, Perez S. P, Akesson K, Majidi S, Witsch M, Hofter S, Johnson S, Pilgaard K.A, Kummernes S.J, Robinson H, Eeg-Olofsson K, Ebekozien O, Holl R.W, Svennson J, Skrivarhaug T, Warner J, Craig M.E, Maahs D (2022) A collaborative comparison of international pediatric diabetes registries. Pediatric Diabetes 2022 Sep;23(6):627-640. IF: 3.488

Primary Investigator: Torild Skrivarhaug; MD, PhD, Professor

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 Christian Stene, PhD, senior researcher, Norwegian Institute for Public Health
Siv Janne Kummernes, RN, MSc
Osman Gani, PhD, statistician
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
Nicolai A. Lund-Blix (postdoc), PhD
Per M. Thorsby, Ass. Professor, MD, PhD
Kristin Hodnekvam, MD, researcher
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, Sweden and the Sahlgrenska Academy, Institute of Clinical Sciences, University of Gothenburg, Gothenburg, Sweden
Reinhard Holl, Prof. Dr. med. Institut für Epidemiologie und medizinische Biometrie, Universität Ulm