An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry

BACKGROUND: Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that collect data from patients can increase knowledge of the disease’s natural histor...

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Detalles Bibliográficos
Autores principales: Woodward, Len, Johnson, Sally, Walle, Johan Vande, Beck, Joran, Gasteyger, Christoph, Licht, Christoph, Ariceta, Gema
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2016
Materias:
Review
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5117495/
https://www.ncbi.nlm.nih.gov/pubmed/27871301
http://dx.doi.org/10.1186/s13023-016-0537-5

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5117495/
https://www.ncbi.nlm.nih.gov/pubmed/27871301
http://dx.doi.org/10.1186/s13023-016-0537-5

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