Introduction The changing nature of diabetes in the young has underlined the importance of reliable data on where and how patients with diabetes present and live. In the former northern health region of England, an area encompassing North East England and North Cumbria, intriguing patterns in incidence and relationships with socio-economic status have been identified. The study aimed to establish a diabetes registry for children and young people in the former northern health region of England.
Methods NHS Diabetes provided regional paediatric networks with financial support to enable delivery of national outcomes and improve diabetes care in the young. During regional meetings, the North East Clinical Paediatric Network discussed a proposal to fund establishment of a regional registry for patients with diabetes aged <18 years. The plan was universally supported. Funding was used to employ a registry co-ordinator. All regulatory approval applications were completed within a rigorous and transparent ethical framework. User group involvement formed a cornerstone of the process; their feedback underpinned the production of all patient, parents and care givers documentation. A robust data security and protection policy was developed.
Results There has been significant learning regarding resources required to establish a diabetes registry including identification of sustainability issues. Methodologies have been documented and an algorithm has been generated. Data collection commenced in January 2011.
Conclusions Establishing a registry is a complex process requiring many legal and ethical considerations. The algorithm can be used as a generic template to initiate similar registries in other geographical areas or for other diseases types.
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