Rare Diseases
Published August 30, 2022 | Version First version
Dataset Open

ERICA PROMs Repository

Authors/Creators

  • 1. MAPI Research Trust
  • 2. ERN-EuroBloodnet, VHIR
  • 3. ERN EuroBloodNet
  • 4. Orphanet
  • 5. INSERM, Orphanet

Contributors

Project leader:

Project manager:

  • 1. ERICA, FeekDesign
  • 2. ERICA, LUMC/AMC
  • 3. ERICA Coordinator, Endo-ERN, LUMC/AMC

Description

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. Available at ERICA website: ERICA PROMs Repository

Files

ERICA Central Repository of (validated) PCOMs for RDs.pdf

Files (881.6 kB)

Additional details

Funding

European Commission
ERICA - European Rare dIsease research Coordination and support Action 964908