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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Detalhes bibliográficos
Publicado no:Int J Environ Res Public Health
Main Authors: 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
Formato: Artigo
Idioma:Inglês
Publicado em: MDPI 2020
Assuntos:
Review
Acesso em linha: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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