Patient recorded outcome measurements (PROMs) for rare diseases

FAST themes Rare Diseases
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Is there an overview of validated Patient recorded outcome measurements (PROMs) for rare diseases?

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Hello Rosa, with thanks to Céline Desvignes-Gleizes of MAPI-Trust, you can try PROQOLID database:
https://eprovide.mapi-trust.org/advanced-search?database=proqolid
developed by Mapi Research Trust. I f you need more information I can connect you to Céline

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