Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company

INTRODUCTION: Real‐world data are lacking regarding the relationship between prospectively collected patient‐reported outcomes (PROs), clinical outcomes and treatment in people with haemophilia (PWH). The Expanding Communications on Hemophilia A Outcomes (ECHO) registry was designed to address this...

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Detalles Bibliográficos
Autores principales: Hay, Charles R. M., Shima, Midori, Makris, Michael, Jiménez‐Yuste, Victor, Oldenburg, Johannes, Fischer, Kathelijn, Iorio, Alfonso, Skinner, Mark W., Santagostino, Elena, von Mackensen, Sylvia, Kessler, Craig M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2020
Materias:
Original Articles
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7894355/
https://www.ncbi.nlm.nih.gov/pubmed/33094894
http://dx.doi.org/10.1111/hae.14144

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