Abstract

The SHARE project (funded by European Agency Health and Consumers under 2011 1202) deals with the specific needs for optimal care in Pediatric Rheumatic Diseases in each EU country. Optimal care includes diagnosis, management of disease and providing both drug- and non-drug therapies. Diseases of interest are JIA, SLE, juvenile dermatomyositis, scleroderma, vasculitis, APS and periodic fevers. The aim of the project is identify best practices based on a systematic literature review. At various consensus meetings statements are now selected for recommendations for best practices (organization of care, diagnosis and therapy). In order to reinforce the existing networks of PRES and PRINTO a survey on specific needs and practices was performed. Based on the replies or more than 127 pediatric rheumatology centers a detailed map of current practices and needs can be drawn. The Patient's view is incorporated using a detailed webbased survey (in more than 12 languages) that is currently recruiting. Separate workpackages analyse ethical and legal regulations regarding participation of minor in research and educational programmes. The final conclusions will be presented at an international meeting later this this year for all involved stakeholders such as health care authorities, insurance companies, pharma, patients and health care providers.