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

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

Abstract 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 natura...

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Bibliographic Details
Main Authors: Len Woodward, Sally Johnson, Johan Vande Walle, Joran Beck, Christoph Gasteyger, Christoph Licht, Gema Ariceta, on behalf of the aHUS Registry SAB
Format: Article
Language:English
Published: BMC 2016-11-01
Series:Orphanet Journal of Rare Diseases
Subjects:
aHUS
Patient advocacy
Patient engagement
Registry
Online Access:http://link.springer.com/article/10.1186/s13023-016-0537-5

Internet

http://link.springer.com/article/10.1186/s13023-016-0537-5

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