ERICA PROMs Repository
<p>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 <a href="https://www.orpha.net/">Orphanet</a>, <a href="https://eprovide.mapi-trust.org/">Mapi Research Trust/ICON</a> and <a href="https://eurobloodnet.eu/">ERN EuroBloodNet</a> (VHIR, APHP), and the active contribution of ERNs and ePAGs. Available at ERICA website: <a href="https://erica-rd.eu/work-packages/patient-centred-research/proms-repository/">ERICA PROMs Repository</a></p>
ShareScore
44/100
Overall dataset sharing score
Score breakdown
These five areas show where the dataset supports — or may limit — practical reuse.
- Stewardship
- 8
- Harmonization
- 4
- Access
- 16
- Reuse readiness
- 8
- Engagement
- 8
Topics
ScienceDex for faculty
Your academic CV and NIH biosketch
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