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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Bibliographic Details

Published in:	Data Science Journal
Main Authors:	Philip van Damme, Pablo Alarcón Moreno, César H. Bernabé, Alberto Cámara Ballesteros, Clémence M. A. Le Cornec, Bruna Dos Santos Vieira, K. Joeri van der Velde, Shuxin Zhang, Claudio Carta, Ronald Cornet, Peter A.C. ’t Hoen, Annika Jacobsen, Morris A. Swertz, Marco Roos, Nirupama Benis
Format:	Article
Language:	English
Published:	Ubiquity Press 2023-06-01
Subjects:	fair data stewardship data management planning rare diseases european reference networks fair data patient registries
Online Access:	https://account.datascience.codata.org/index.php/up-j-dsj/article/view/1507