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RD-RAP: beyond rare disease patient registries, devising a comprehensive data and analytic framework
Within the 21 APEC economies alone, there are an estimated 200 million individuals living with a rare disease. As such, health data on these individuals, and hence patient registries, are vital. However, registries can come in many different forms and operating models in different jurisdictions. The...
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| Publicado no: | Orphanet J Rare Dis |
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| Main Authors: | , , |
| Formato: | Artigo |
| Idioma: | Inglês |
| Publicado em: |
BioMed Central
2019
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| Assuntos: | |
| Acesso em linha: | https://ncbi.nlm.nih.gov/pmc/articles/PMC6626403/ https://ncbi.nlm.nih.gov/pubmed/31300021 https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-019-1139-9 |
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