Because the diseases registered in EPSA are rare, there is a paucity of (level 1-) evidence on these topics. ERNICA considers scientific research culminating in evidence-based medicine, of vital importance to enhance quality of care and therefore supports initiatives to use data collected in the EPSA to that end. Scientific proposals to use the data will be reviewed thoroughly and on several levels, ensuring the data is utilised carefully, optimally and resulting in sound scientific evidence.

As the EPSA | ERNICA Registry is currently being built, entered data is not yet considered to be sufficient, accurate and complete. Consequently, at this time the data is not yet available. As soon as this changes, the application procedure to obtain access to the data will be published here.