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NZ Register of Children and Youth with Diabetes

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Establishing a national register for diabetes using data routinely collected by the Ministry of Health

Youth Register

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Diabetes is one of the most common childhood diseases, but nationwide incidence and prevalence data for New Zealand 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. 

The Paediatric Society of New Zealand's National Child and Youth Diabetes Clinical Network Group is establishing a national register of children and young people with diabetes from routinely collected clinical data. The register will function as a prevalence snapshot or census of all individuals with type 1 diabetes under 15 years, that will be updated annually. 

Data grouped by District Health Board (DHB) was obtained from the Ministry of Health 2011 Virtual Diabetes Register (version 6.82).  Diabetes flags derived from coded events routinely collected by the Ministry of Health included diabetes-associated hospital admissions, prescriptions for diabetes-related therapies, attendance at specialist or management clinics, and retinal screening. The diabetes service in each DHB was provided with a dataform that had been pre-populated with all individuals in that DHB identified as having diabetes. Each diabetes service validated the list, deleting individuals no longer in that service, and adding in individuals that have not been captured. 

Additionally, in the first year, clinics were asked to provide for each patient the last recorded HbA1c, height and weight, insulin doses per day, and whether or not urine microalbumin was measured in 2011.

In preliminary results from all 20 DHBs, 1103 cases of type diabetes under 15 years of age were confirmed, giving a prevalence of 127/100 000.  Among cases the mean (SEM) age at diagnosis and at end 2011 was 6.79 (0.11) years and 10.90 (0.10) years respectively.  The mean (SEM) last recorded HbA1c was 71.7 (0.5) mmol/mol, n=1040).  Two (33.4%) and three (29.5%) injections per day were the most common insulin regimens, followed by insulin pumps (20.7%). 

Among the diabetes flags employed, the sensitivity and specificity of attendance at specialist or management clinics was highly variable, suggesting different coding practices between DHBs.  Retinal screening showed excellent specificity but poor sensitivity.

The use of data routinely collected by the Ministry of Health to form the basis of a national register is feasible but currently requires detailed local validation.

Document last reviewed: June 2014

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