DPARD: rationale, design and initial results from the Dutch national diabetes registry

Abstract

Background Treatment of diabetes mellitus has majorly improved over the past century, however, the disease burden is high and its prevalence still expanding. Further insight in the diabetes population is imperative to improve the quality of diabetes care by enhancement of knowledge-based diabetes management strategies. To this end, in 2017 a Dutch nationwide consortium of diabetologists, paediatric endocrinologists, and diabetes patients has founded a national outpatient diabetes care registry named Dutch Pediatric and Adult Registry of Diabetes (DPARD). We aim to describe the implementation of DPARD and to provide an overview of the characteristics of patients included during the first 2 years. Methods For the DPARD cohort with long-term follow-up of observational nature, hospital data are gathered directly from electronic health records and securely transferred and stored. DPARD provides weekly updated clinical information on the diabetes population care on a hospital-level benchmarked against the national average. Results Between November 2017 and January 2020, 20,857 patients were included from 8 (11%) Dutch hospitals with a level of care distribution representative of all diabetic outpatients in the Netherlands. Among patients with known diabetes type, 41% had type 1 diabetes, 51% type 2 diabetes, and 8% had diabetes due to other causes. Characteristics of the total patient population were similar to patients with unknown diabetes classification. HbA1c levels decreased over the years, while BMI levels showed an increase over time. Conclusions The national DPARD registry aims to facilitate investigation of prevalence and long-term outcomes of Dutch outpatients with diabetes mellitus and their treatment, thus allowing for quality improvement of diabetes care as well as allowing for comparison of diabetes care on an international level.

Effects of COVID-19 on Dutch diabetes care

“…It is unlikely that diminished data quality would explain the lower performance of BMI, since data quality in DPARD improves every time data is provided by a hospital and our study includes only hospitals delivering data in both 2019 and 2020. [15] Furthermore, the fact that blood pressure was recorded more frequently in 2020 in patients visiting the outpatient clinic in either 2019 or 2020 seems discordant with a decline in outpatient visits. Yet in patients visiting in both years, blood pressure performance was decreased in 2020, suggesting an increase in data quality over time as a likely explanation.…”

“…The rationale and design of the DPARD registry has been described in detail previously. [15] In short, DPARD is a nationwide quality registry of adult and pediatric diabetes patients treated in all secondary and tertiary outpatient care across the Netherlands. Five hospitals provided data in 2019 and 2020.…”

Gender gaps in type 1 diabetes care

“…The Dutch Pediatric and Adult Registry of Diabetes (DPARD) is a national quality registry of adult and pediatric patients with diabetes mellitus treated in secondary and tertiary outpatient care across the Netherlands [ 12 ]. The registry was launched in 2017 by the BIDON foundation, a Dutch nationwide consortium of diabetologists, pediatric endocrinologists, and diabetes patients.…”

Socio‐economic disparities in hospital care among Dutch patients with diabetes mellitus

“…10 Future studies should further delve into these differences in the use of hospital care and how they are associated with clinical outcomes of patients with diabetes across SES categories, for example, with data from the Dutch Paediatric and Adult Registry of Diabetes (DPARD). 33 It is known from observational studies that SES influences clinical outcomes such as glycaemic control in type 1 diabetes. 10,30 In addition, a recent study has shown that CSII and rtCGM, mediate the association between SES and glycaemic control.…”