You have been asked to fill in a web based survey regarding your disease or the disease of your child. This survey is part of SHARE: "Single Hub and Access point for Paediatric Rheumatology in Europe". SHARE is an European Union funded project (project number 2011 1202; Principal Investigator Nico Wulffraat, Utrecht, The Netherlands) with the main objective to improve the care for paediatric rheumatic diseases throughout Europe.
One aim of SHARE is to provide individual European countries with recommendations for the care of children with rheumatic diseases. These recommendations will be based on systematic literature reviews of medical publications and on surveys, mapping current practices, sent to both doctors and patients in pediatric rheumatology centers belonging to the PRINTO network all over the world.
The surveys for treating physicians have already been answered by more than 250 PRINTO and PRES members (doctors). In addition, a patient survey now will be performed to ensure the patient perspective is put forward in this project. For this important part of SHARE, we kindly ask for your help by filling out the web based survey. The outcome of these surveys will be used for the development of country specific recommendations and development of best practices for care for Paediatric Rheumatic Diseases in Europe.
The survey will take approximately 15 minutes.
If you have any questions regarding the survey, you can ask your treating physician or send an email to
or the coordinating team of SHARE (Dr.
and professor Nico Wulffraat, paediatric rheumatologists in Utrecht, the Netherlands).