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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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Bibliografski detalji
Izdano u:Orphanet J Rare Dis
Glavni autori: Woodward, Len, Johnson, Sally, Walle, Johan Vande, Beck, Joran, Gasteyger, Christoph, Licht, Christoph, Ariceta, Gema
Format: Artigo
Jezik:Inglês
Izdano: BioMed Central 2016
Teme:
Online pristup:https://ncbi.nlm.nih.gov/pmc/articles/PMC5117495/
https://ncbi.nlm.nih.gov/pubmed/27871301
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-016-0537-5
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