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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

Authors

Philip van Damme

p.vandamme@amsterdamumc.nl

Amsterdam UMC location University of Amsterdam, Department of Medical Informatics, Meibergdreef 9, Amsterdam; Amsterdam Public Health, Digital Health & Methodology, Amsterdam

Pablo Alarcón Moreno

pablo.alarcon@ejprd-project.eu

Departamento de Biotecnología-Biología Vegetal, Escuela Técnica Superior de Ingeniería Agronómica, Alimentaria y de Biosistemas, Centro de Biotecnología y Genómica de Plantas. Universidad Politécnica de Madrid (UPM)–Instituto Nacional de Investigación y Tecnología Agraria y Alimentaria-CSIC (INIA-CSIC), Campus Montegancedo 28223 Pozuelo de Alarcón (Madrid)

César H. Bernabé

cesar.bernabe@ejprd-project.eu

Department of Human Genetics, Leiden University Medical Center, Leiden

Alberto Cámara Ballesteros

alberto.camara.ballesteros@alumnos.upm.es

Departamento de Biotecnología-Biología Vegetal, Escuela Técnica Superior de Ingeniería Agronómica, Alimentaria y de Biosistemas, Centro de Biotecnología y Genómica de Plantas. Universidad Politécnica de Madrid (UPM)–Instituto Nacional de Investigación y Tecnología Agraria y Alimentaria-CSIC (INIA-CSIC), Campus Montegancedo 28223 Pozuelo de Alarcón (Madrid)

Clémence M. A. Le Cornec

clemence.lecornec@ejprd-project.eu

Division of Paediatric Nephrology, Centre for Paediatrics and Adolescent Medicine, University of Heidelberg, Heidelberg

Bruna Dos Santos Vieira

Bruna.DosSantosVieira@radboudumc.nl

Center for Molecular and Biomolecular Informatics, Radboud University Medical Center, Nijmegen; Department of Medical Imaging, Radboud University Medical Center, Nijmegen

K. Joeri van der Velde

joeri.vandervelde@ejprd-project.eu

Genomics Coordination Center, University of Groningen and University Medical Center, Groningen

Shuxin Zhang

s.x.zhang@amsterdamumc.nl

Amsterdam UMC location University of Amsterdam, Department of Medical Informatics, Meibergdreef 9, Amsterdam; Amsterdam Public Health, Digital Health & Methodology, Amsterdam

Claudio Carta

claudio.carta@iss.it

Instituto Superiore di Sanità, Rome

Ronald Cornet

r.cornet@amsterdamumc.nl

Amsterdam UMC location University of Amsterdam, Department of Medical Informatics, Meibergdreef 9, Amsterdam; Amsterdam Public Health, Digital Health & Methodology, Amsterdam

Peter A.C. ’t Hoen

Peter-Bram.tHoen@radboudumc.nl

Center for Molecular and Biomolecular Informatics, Radboud University Medical Center, Nijmegen

Annika Jacobsen

A.Jacobsen@lumc.nl

Department of Human Genetics, Leiden University Medical Center, Leiden

Morris A. Swertz

m.a.swertz@rug.nl

Genomics Coordination Center, University of Groningen and University Medical Center, Groningen

Marco Roos

m.roos@lumc.nl

Department of Human Genetics, Leiden University Medical Center, Leiden

Nirupama Benis

n.benis@amsterdamumc.nl

Amsterdam UMC location University of Amsterdam, Department of Medical Informatics, Meibergdreef 9, Amsterdam; Amsterdam Public Health, Digital Health & Methodology, Amsterdam
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,
rare diseases,
European Reference Networks,
FAIR data,
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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