PROMs Repository – Content
The ERICA Patient Reported Outcome Measures (PROMs) Repository is the first attempt to identify and centralize Clinical Assessment Outcomes questionnaires of relevance for rare diseases and constitutes a milestone in the Europe-wide standardization of Patient-Centered Outcome Measures (PCOMs) and PROMs for rare diseases. It has been made possible through the joint collaboration between Orphanet, Mapi Research Trust/ICON and ERN EuroBloodNet (VHIR, APHP), and the active contribution of ERNs and ePAGs.
Access their website here for more information.
Contribution
The central repository is a dynamic and evolutive service and should be regarded as a centralized and standardized access gate to more in depth information contained in PROQOLID™.
Access their website here for more information or in case you would like to contribute to this repository.
