The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry

Rare disease (RD) registries aim to promote data collection and sharing, and facilitate multidisciplinary collaboration with the overall aim of improving patient care. Recommendations relating to the minimum standards necessary to develop and maintain high quality registries are essential to ensure...

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Detalles Bibliográficos
Autores principales: Ali, Salma Rashid, Bryce, Jillian, Kodra, Yllka, Taruscio, Domenica, Persani, Luca, Ahmed, Syed Faisal
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Article
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8620980/
https://www.ncbi.nlm.nih.gov/pubmed/34831724
http://dx.doi.org/10.3390/ijerph182211968

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8620980/
https://www.ncbi.nlm.nih.gov/pubmed/34831724
http://dx.doi.org/10.3390/ijerph182211968

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