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Authors
Vinent, Joan Lluis
Passos, Joao
Aguilera, Aitana
Pires, Ana Elisabete
Benedito-Palos, Laura
Gutiérrez, Laura
Ribera, Anna
Blanco, Ignacio
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Funding
Funding for this research was provided by:
Alexion Pharma Spain S.L.
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Article History
Received: 20 December 2024
Accepted: 18 April 2025
First Online: 5 August 2025
Declarations
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: The study was conducted following the Declaration of Helsinki and is consistent with Good Pharmacoepidemiology Practices. The University Hospital Germans Trias i Pujol and Instituto Português de Oncologia de Lisboa Francisco Gentil (IPOLFG) Clinical Research Ethics Committees evaluated and approved the study. Written informed consent was obtained from all participants in the focus group and the study.
: Not applicable.
: LG and AR are employees of AstraZeneca Rare Diseases Unit. JLV, JP, AA, AEP, LBP and IB declare no conflicts of interest.
