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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Vydáno v:Int J Environ Res Public Health
Hlavní autoři: 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
Médium: Artigo
Jazyk:Inglês
Vydáno: MDPI 2020
Témata:
Review
On-line přístup: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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