The general aim of this project is to build a network on autoinflammatory diseases in childhood. In particular the project would like to complete and integrate already existing initiatives in this field with the following actions:
- sensitize paediatricians and paediatric rheumatologists to the prompt recognition of these diseases,
- give a proper information among families affected by these conditions,
- increase the knowledge on the clinical presentation, response to treatment and complications of theses rare disorders.
The project will be devoted to development of strategies and mechanisms for exchange information among people affected by rare diseases and promotion of better epidemiological studies, codification, classification and definition. Moreover this project is aimed to support European networks of references for rare diseases in order to establish guidelines for best practice on treatment and to share knowledge on these diseases.
The following instruments will be used:
- a web-based survey on the prevalence of diagnosed or suspected autoinflammatory diseases among all European Paediatric Rheumatology Centers,
- international registries for all those diseases lacking of a web-based method for data collection,
- survey on the efficacy of treatment in these disorders and elaboration of outcome measures for possible future therapeutic trials,
- informative webpages on each disorders for patients and physicians
The project will contribute to better exchange of information on autoinflammatory diseases among the paediatric rheumatology centres dealing with these disorders and other already existing initiative on rare diseases. It will improve the early diagnosis and the global management of the autoinflammatory syndromes and to disseminate proper information to paediatricians and affected families.