Quality parameters are highly relevant for patient organisations since these must be addressed by local health care providers and authorities.
ENCA (European Network for Children with Arthritis) representatives are part of our steering committee. ENCA has parents trained in research, epidemiology and health care amongst its members.
Patient involvement through ENCA can help us analysing the relevance of these complications for the disease burden. They will be actively involved in ranking the importance of the observed comorbidities/complications and thus in discussing priorities for further research.
Parents/patients can evaluate obtained information on these events for websites with patient information or hospitals.