SWEET – where are we heading with international type 1 diabetes registries?

In light of the technological advances in diabetes therapy becoming more widely available and with healthcare costs rising generally, economic data regarding health care are desperately needed to allocate resources appropriately. ‘SWEET’ is an acronym derived from ‘Better control in Pediatric and Adolescent diabeteS: Working to crEate CEnTers of Reference’ and is based on a partnership of established national and European diabetes organizations (www.sweet-project.eu) led by the International Society for Pediatric and Adolescent Diabetes (ISPAD), with the initial participating pediatric centres being from the Czech Republic, France, Germany, Greece, Hungary, Italy, Luxembourg, the Netherlands, Poland, Portugal, Romania, Sweden, and the UK. In addition, the valuable contributions of the International Diabetes Federation (IDF) Europe, the Federation of European Nurses in Diabetes (FEND), and Primary Care Diabetes Europe (PCDE) need to be acknowledged. Co-funding for the initial project was granted by the European Public Health Executive Agency with additional funds from corporate partners and foundations (see acknowledgements for the complete list). The present Special Issue of Pediatric Diabetes summarizes the major findings of the project. Before SWEET, 17 out of 26 EU countries had officially recognized centers for pediatric diabetes, but only eight of them had defined criteria for becoming such a center. A system of quality control of pediatric diabetes at the national level was reported from 7/26 countries. Only 13/26 EU countries had a pediatric diabetes register. These SWEET results were based on 108 datasets from healthcare professionals caring for >29 000 children and adolescents with diabetes in Europe. Recommendations for diabetes care and treatment, as well as age-appropriate education for children and adolescents with diabetes and pediatric training programs for healthcare professionals have been developed by SWEET. The proposed Criteria for an European Pediatric Diabetes Reference Centre include a multidisciplinary approach, an ongoing electronic documentation of at least 150 pediatric diabetes patients ≤18 years (i.e., at least age, diabetes duration, gender, HbA1c, type of diabetes), and the readiness to participate in external peer-reviewed auditing process and quality control circles. An initial 12 centres were approved jointly by the ISPAD Executive Committee and IDF Europe. It has been our experience that this approval has helped to raise awareness for the efforts to achieve optimal diabetes care within the different local circumstances. There is reason to believe that the international comparison within the SWEET project will help to secure funding from payers to ensure quality delivery of care and to harmonize pediatric diabetes healthcare delivery on the highest achievable standard within the ramifications of the differing national health systems. Optimal functioning of a team requires clear identification of all team players, with the child and the family at the centre of care. So far, huge differences have been identified between the different multidisciplinary teams, not only in numbers of healthcare professionals, but as well their training and the services provided. Therefore, a Toolbox supporting the creation of Centres of Reference for pediatric and adolescent diabetes has been developed. For benchmarking and quality control, a platform was put in place that allows any participating centre to import and input data online using a standard diabetes data set for pediatric diabetes patients to monitor the long-term outcome after the conclusion of the initial SWEET project. This will allow adapting the current recommendations on the basis of the ongoing evaluations. Adolescents with type 1 and type 2 diabetes are particularly prone to poor metabolic and psychosocial outcomes due to the potentially long diabetes duration. At the same time, the study of the effect of diabetes in this age group provides an opportunity to study early vascular ageing without other concomitant diseases. Normal ageing with diabetes starts in childhood as many processes leading to debilitating complications later in life have their onset then. This offers a unique opportunity to identify potential factors that are important to delay accelerated biological ageing