EURO-NMD registry: federated FAIR infrastructure, innovative technologies and concepts of a patient-centred registry for rare neuromuscular disorders
2024
The EURO-NMD Registry collects data from all neuromuscular patients seen at EURO-NMD's expert centres. In-kind contributions from three patient organisations have ensured that the registry is patient-centred, meaningful, and impactful. The consenting process covers other uses, such as research, cohort finding and trial readiness.
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Библиографическая информация
Другие темы
Registry hub; Fair data; Rare diseases; Registry
Язык
Английский
Лицензия
https://creativecommons.org/licenses/by/4.0/, openAccess
Тип
Journal Article; Journal Part
2024-03-21
2025-11-19
MODS
Поставщик данных
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