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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...
Uloženo v:
| Vydáno v: | Orphanet J Rare Dis |
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| Hlavní autoři: | , , |
| Médium: | Artigo |
| Jazyk: | Inglês |
| Vydáno: |
BioMed Central
2019
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| Témata: | |
| On-line přístup: | 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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