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Establishing Patient Registries for Rare Diseases: Rationale and Challenges
Globally, an estimated 350 million people are affected by a rare disease diagnosis. Knowledge limitations persist for the majority of rare conditions due to systemic and structural challenges in healthcare and research. Disease-specific patient populations are often small and geographically disperse...
| Autores principales: | , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
Springer International Publishing
2020
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7286934/ https://www.ncbi.nlm.nih.gov/pubmed/32215853 http://dx.doi.org/10.1007/s40290-020-00332-1 |