NZ Register of Children and Youth with Diabetes

Diabetes is one of the most common diseases of childhood, but nationwide incidence and prevalence data for New Zealand (NZ) are lacking.  A national register that can monitor epidemiology, clinical indicators of diabetes care, and improve the care of these children through collaborative audit and research is needed. As a foundation project for the New Zealand Network for Children and Young People with Diabetes, this research aimed to establish a national register of children and young people with diabetes from routinely collected clinical data and to determine the prevalence of diabetes in those under 15 years of age in NZ. An additional long term aim was to initiate accurate tracking of disease incidence and prevalence, and the prospective collection of a limited dataset of clinical indicators of diabetes care.

The Virtual Diabetes Register (VDR) established by the NZ Ministry of Health includes all individuals identified by a number of diabetes flags including diabetes-associated hospital admissions, prescriptions for diabetes-related therapies, attendance at specialist or management clinics, laboratory tests for HbA1c and retinal screening. Cases aged under 15 years of age identified from the 2011 VDR (version 6.82) were validated by the diabetes service in each District Health Board. Any individuals with diabetes not captured by the VDR were added. The core dataset collected for each case included: demographic and anthropometric data; last measured HbA1c; insulin regimen details; and whether urine microalbumin was measured in 2011.

The VDR identified 1641 individuals with diabetes under 15 years of age as at 31 December 2011. Diabetes was validated in 1201 individuals, including 1136 cases of type 1 diabetes and 31 cases of type 2 diabetes. The prevalence of type 1 diabetes was 131/100 000. Among cases the mean (SEM) age at diagnosis and at end 2011 was 6.78 (0.11) years and 10.89 (0.09) years respectively. The mean (SEM) last recorded HbA1c was 71.6 (0.5) mmol/mol (n=1070). Twice daily insulin injections (BD) was the most common insulin regimen (34%), followed by three injections per day (29%), with some 20% of cases using continuous subcutaneous insulin infusion (CSII).

The use of data routinely captured by the Ministry of Health as part of the VDR is a highly sensitive source for identification of diabetes in this age group and forms a suitable basis for a national paediatric diabetes register with detailed local validation.

For further information on PSNZ / MoH Clinical Network development, please contact PSNZ CEO, Mollie Wilson, or PSNZ Secretariat Denise Tringham,