@inproceedings{5c897131e41f418dbf52b2d2c12d5394,
title = "Surveyed common data access policies preferences amongst European Reference Networks",
abstract = "Background: Data sharing amongst existing Rare Disease (RD) registries, even though being a process that presents multiple barriers, would enrich and ease research, as well as facilitate interoperability between the registries themselves. Methods: To understand their preferences on sharing data, we surveyed 24 European Reference Networks (ERNs) from the RD Domain. Results: The answers show that most ERNs are willing to share a set of Common Data Elements for free with authenticated users at an aggregated or pseudonymized level the moment the data is collected. The one exception is the industry sector, to which ERNs prefer to ask for a fee. Objective: Our aim is to create a reference for how most RD registries are willing to share their data, improving the ability of other stakeholders to make informed decisions to make their data interoperable.",
keywords = "FAIR data sharing, Rare diseases, patient registries",
author = "Alberto C{\'a}mara and Nirupama Benis and Bernab{\'e}, {C. sar H.} and Coelho, {In{\'e}s D. O.} and {le Cornec}, {Cl{\'e}mence M. A.} and Aylin Demir and Vieira, {Bruna D. S.} and Ram{\'i}rez, {Jose A.} and {van der Velde}, {K. Joeri} and Shuxin Zhang and Ronald Cornet and Annika Jacobsen and Marco Roos and Franz Schaefer and Swertz, {Morris A.} and Wilkinson, {Mark D.}",
note = "Funding Information: This work was supported by the European Joint Programme on Rare Diseases, ERICA and the following Europen Reference Networks: BOND, ERKNeT, Endo-ERN, ERNICA, EURA-CAN, eUROGEN, EURONMD, GUARD-Heart, LUNG, MetabERN, PaedCan, RARE-LIVER, RITA, VASCERN. Publisher Copyright: {\textcopyright} 2023 Copyright for this paper by its authors. Use permitted under Creative Commons License Attribution 4.0 International (CC BY 4.0).; 14th International Conference on Semantic Web Applications and Tools for Health Care and Life Sciences, SWAT4HCLS 2023 ; Conference date: 13-02-2023 Through 16-02-2023",
year = "2023",
language = "English",
volume = "3415",
series = "CEUR Workshop Proceedings",
publisher = "CEUR-WS",
pages = "107--111",
editor = "Atsuko Yamaguchi and Andrea Splendiani and Marshall, {M. Scott} and Chris Baker and Jerven Bolleman and Albert Burger and Castro, {Leyla Jael} and Ole Eigenbrod and Sabine Osterle and Martin Romacker and Andra Waagmeester",
booktitle = "SWAT4HCLS 2023 - 14th International Conference on Semantic Web Applications and Tools for Health Care and Life Sciences",
}