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Objective: Our aim is to create a reference for how most RD registries are willing to share their data, improving the ability of other stakeholders to make ...
Methods: To understand their preferences on sharing data, we surveyed 24 European Reference Networks (ERNs) from the RD Domain. Results: The answers show that ...
Results: The answers show that most ERNs are willing to share a set of Common Data Elements for free with authenticated users at an aggregated or pseudonymized ...
Results: The answers show that most ERNs are willing to share a set of Common Data Elements for free with authenticated users at an aggregated or pseudonymized ...
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Feb 13, 2023 · Methods: To understand their preferences on sharing data, we surveyed 24 European Reference Networks (ERNs) from the RD Domain. Results: The ...
Methods: To understand their preferences on sharing data, we surveyed 24 European Reference Networks (ERNs) from the RD Domain. Results: The answers show that ...
Results: The answers show that most ERNs are willing to share a set of Common Data Elements for free with authenticated users at an aggregated or pseudonymized ...
Surveyed common data access policies preferences amongst European Reference Networks. A Cámara, N Benis, CH Bernabé, ID Coelho, C Le Cornec, A Demir ...
Dec 14, 2022 · Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries.
Between 27 and 36 million people in the EU live with a rare disease. There are between 6 000 and 8 000 distinct rare diseases in the EU.
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