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...

Descripción completa

Detalles Bibliográficos
Autores principales: Boulanger, Vanessa, Schlemmer, Marissa, Rossov, Suzanne, Seebald, Allison, Gavin, Pamela
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2020
Materias:
Leading Article
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

Internet

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

Ejemplares similares