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

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

Data Science Journal

Volume 22 (2023): Issue 1

By: 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 and Nirupama Benis

Open Access

|Jun 2023

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DOI: https://doi.org/10.5334/dsj-2023-012 | Journal eISSN: 1683-1470

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Language: English

Submitted on: Nov 30, 2022

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Accepted on: Apr 26, 2023

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Published on: Jun 5, 2023

Published by: Ubiquity Press

In partnership with: Paradigm Publishing Services

Publication frequency: 1 issue per year

Keywords:

FAIR data stewardship,

data management planning,

European Reference Networks,

patient registries

© 2023 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, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.

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