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...

Full description

Bibliographic Details

Published in:	Data science journal Vol. 22; p. 12
Main Authors:	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
Format:	Journal Article
Language:	English
Published:	Ubiquity Press 05.06.2023
Subjects:	data management planning european reference networks fair data fair data stewardship patient registries rare diseases
ISSN:	1683-1470, 1683-1470
Online Access:	Get full text
Tags:	Add Tag No Tags, Be the first to tag this record!