Development of the Fabry Disease Patient-Reported Outcome (FD-PRO): a new instrument to measure the symptoms and impacts of Fabry Disease

BACKGROUND: The systematic collection of disease-specific symptoms and impacts on the lives of patients with Fabry Disease (FD) can offer unique insights into the patient experience, yet no disease-specific tool to measure FD symptoms exists. This study describes the development of the Fabry Disease...

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Vydáno v:Orphanet J Rare Dis
Hlavní autoři: Hamed, Alaa, DasMahapatra, Pronabesh, Lyn, Nicole, Gwaltney, Chad, Hopkin, Robert J.
Médium: Artigo
Jazyk:Inglês
Vydáno: BioMed Central 2021
Témata:
Research
On-line přístup:https://ncbi.nlm.nih.gov/pmc/articles/PMC8235809/
https://ncbi.nlm.nih.gov/pubmed/34172077
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-021-01894-2
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