The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes

Rare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other members of the multidisciplinary team. RD registries enable data sharing and promotion of research and audits, often in an international setting, with the overall...

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Wedi'i Gadw mewn:
Manylion Llyfryddiaeth
Cyhoeddwyd yn:Int J Environ Res Public Health
Prif Awduron: Ali, Salma R., Bryce, Jillian, Tan, Li En, Hiort, Olaf, Pereira, Alberto M., van den Akker, Erica L. T., Appelman-Dijkstra, Natasha M., Bertherat, Jerome, Cools, Martine, Dekkers, Olaf M., Kodra, Yllka, Persani, Luca, Smyth, Arelene, Smythe, Christopher, Taruscio, Domenica, Ahmed, S. Faisal
Fformat: Artigo
Iaith:Inglês
Cyhoeddwyd: MDPI 2020
Pynciau:
Review
Mynediad Ar-lein:https://ncbi.nlm.nih.gov/pmc/articles/PMC7727867/
https://ncbi.nlm.nih.gov/pubmed/33255540
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.3390/ijerph17238743
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