Danish Registry of Childhood and Adolescent Diabetes

Abstract

Aim: The aims of the Danish Registry of Childhood and Adolescent Diabetes (DanDiabKids) are to monitor and improve the quality of care for children and adolescents with diabetes in Denmark and to follow the incidence and prevalence of diabetes.

Study population: The study population consists of all children diagnosed with diabetes before the age of 15 years since 1996. Since 2015, every child followed up at a pediatric center (<18 years of age) will be included.

Main variables: The variables in the registry are the quality indicators, demographic variables, associated conditions, diabetes classification, family history of diabetes, growth parameters, self-care, and treatment variables. The quality indicators are selected based on international consensus of measures of good clinical practice. The indicators are metabolic control as assessed by HbA1c, blood pressure, albuminuria, retinopathy, neuropathy, number of severe hypoglycemic events, and hospitalization with ketoacidosis.

Descriptive data: The number of children diagnosed with diabetes is increasing with ∼3% per year mainly for type 1 diabetes (ie, 296 new patients <15 years of age were diagnosed in 2014). The disease management has changed dramatically with more children treated intensively with multiple daily injections, insulin pumps, and increased number of self-monitored blood glucose values per day. These initiatives have resulted in a significant improvement in HbA1c over the years and a decrease in the number of children experiencing severe hypoglycemia, diabetic nephropathy, and retinopathy.

Conclusion: The systematic collection of data in DanDiabKids documents improved quality of care over the last 12 years, despite a substantial increase in the number of patients cared for by pediatric departments in Denmark, fulfilling the purpose of the registry.

Keywords: DanDiabkids; HbA1c; quality of care; severe hypoglycemia; treatment modalities.

Figure 1

Newly diagnosed patients per year. Notes: The number of patients diagnosed per year categorized according to the latest classification. MODY is based on genetic tests. Some individuals were initially diagnosed as type 1 diabetes but later reclassified due to new genetic tests. The ascertainment is >99% per year. Abbreviations: MODY, maturity onset diabetes of the young; DM, diabetes mellitus.

Figure 2

HbA1c and severe hypoglycemic events (per 100 person-years). Notes: The fluctuation in HbA1c (bars) and the incidence of severe hypoglycemic events (unconsciousness or seizures [circles]) during the last 12 years in children diagnosed with type 1 diabetes before the age of 15 years. HbA1c is in mmol/mol (bars), whereas the incidence of hypoglycemia (IR) is number per 100 person-years (circles). Data completeness increased from 1996 to 2000 and then stabilized above 75%; since 2006, data completeness has exceeded 80%. Abbreviations: IR, incidence rates per 100 person-years; HbA1c, glycated hemoglobin.

Figure 3

Treatment modalities and glucose monitoring. Notes: (A) The number of children treated with different insulin types or insulin pumps per year. Data completeness increased from 1996 to 2000 and thereafter stabilized above 75%; since 2006, it has been stable above 80%. (B) The number of SMBG per day registered for children with diabetes per year or the number using CGMS >1 week per month. Using CGMS >1 week per month overrules the number of SMBG. Data completeness increased from 1996 to 2000 and thereafter stabilized above 75%; since 2006, is has been stable above 80%. Abbreviations: CGMS, continuous glucose monitoring; SMBG, self-monitored blood glucose values; NPH, neutral protamine hagedorn.