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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Auteurs principaux: Salma Rashid Ali, Jillian Bryce, Yllka Kodra, Domenica Taruscio, Luca Persani, Syed Faisal Ahmed
Format: article
Langue:EN
Publié: MDPI AG 2021
Sujets:
R
Accès en ligne:https://doaj.org/article/148e8942e6814e4f800464545445c89d
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