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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...

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Detalhes bibliográficos
Publicado no:Pharmaceut Med
Main Authors: Boulanger, Vanessa, Schlemmer, Marissa, Rossov, Suzanne, Seebald, Allison, Gavin, Pamela
Formato: Artigo
Idioma:Inglês
Publicado em: Springer International Publishing 2020
Assuntos:
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC7286934/
https://ncbi.nlm.nih.gov/pubmed/32215853
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1007/s40290-020-00332-1
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