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...

Descripción completa

Detalles Bibliográficos
Autores principales: Bellgard, Matthew I., Snelling, Tom, McGree, James M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2019
Materias:
Position Statement
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6626403/
https://www.ncbi.nlm.nih.gov/pubmed/31300021
http://dx.doi.org/10.1186/s13023-019-1139-9

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6626403/
https://www.ncbi.nlm.nih.gov/pubmed/31300021
http://dx.doi.org/10.1186/s13023-019-1139-9

Ejemplares similares