A Resource for Guiding Data Stewards to Make European Rare Disease Patient Registries FAIR

Objective: This paper reports on the development of a dynamic data management planning questionnaire to guide data stewards of the European Reference Network (ERN) rare disease patient registries to make their data findable, accessible, interoperable, and reusable (FAIR). As part of this work, the q...

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Vydané v:	Data science journal Ročník 22; s. 12
Hlavní autori:	van Damme, Philip, Moreno, Pablo Alarcón, Bernabé, César H., Ballesteros, Alberto Cámara, Le Cornec, Clémence M. A., Dos Santos Vieira, Bruna, van der Velde, K. Joeri, Zhang, Shuxin, Carta, Claudio, Cornet, Ronald, ’t Hoen, Peter A.C., Jacobsen, Annika, Swertz, Morris A., Roos, Marco, Benis, Nirupama
Médium:	Journal Article
Jazyk:	English
Vydavateľské údaje:	Ubiquity Press 05.06.2023
Predmet:	data management planning european reference networks fair data fair data stewardship patient registries rare diseases
ISSN:	1683-1470, 1683-1470
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