Ethics and regulatory guidance to address the challenges encountered in research on rare diseases in a multinational dimension: the experience of a European funded programme

Abstract The rare diseases (RD) research framework presents unique challenges, impacting on ethics and regulatory compliance. Sixty-five projects funded by the European Joint Programme for Rare Diseases (EJP RD) were analysed to identify key ethics and regulatory issues encountered by researchers an...

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Principais autores:	Annalisa Landi, Yanis Mimouni, Anne Demoisy, Joana Namorado, Silvia Torretta, Annunziata D’Ercole, Marta Del Alamo, Spencer Gibson, Daria Julkowska, Viviana Giannuzzi
Formato:	Artigo
Idioma:	Inglês
Publicado em:	BMC 2026-03-01
coleção:	BMC Medical Ethics
Assuntos:	Rare diseases research Ethics Regulatory Challenges
Acesso em linha:	https://doi.org/10.1186/s12910-025-01370-7
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