The ERICA Patient Reported Outcome Measures (PROMs) Repository

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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. From Endo-ERN prof. Nienke Biermasz (LUMC) have participated in the ERICA WP3 PCEWG (Patient-centred expert working group) and contributed in this first version. Via ERICA you can also request access to PROQOLID™ -a comprehensive online database designed to assist among others, academic researchers, physicians, students in the search and evaluation of Clinical Outcome Assessments (COAs).

Link to PROMs: click here.

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