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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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| Publicado no: | Orphanet J Rare Dis |
|---|---|
| Main Authors: | , , , , , , |
| Formato: | Artigo |
| Idioma: | Inglês |
| Publicado em: |
BioMed Central
2016
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| Assuntos: | |
| Acesso em linha: | 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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