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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...
| Autores principales: | , , , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
BioMed Central
2016
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| Materias: | |
| 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 |