Surveyed common data access policies preferences amongst European Reference Networks - Presentation

  1. Cámara Ballesteros, Alberto ORCID logo
  2. Benis, Nirupama ORCID logo
  3. Bernabé, César ORCID logo
  4. de Oliveira Coelho Henriques, Ines ORCID logo
  5. Le Cornec, Clemence
  6. Demir, Aylin
  7. dos Santos Vieira, Bruna ORCID logo
  8. Ramírez García, Jose Antonio ORCID logo
  9. van der Velde, Joeri ORCID logo
  10. Zhang, Shuxin ORCID logo
  11. Cornet, Ronald ORCID logo
  12. Jacobsen, Annika ORCID logo
  13. Roos, Marco ORCID logo
  14. Schaefer, Franz ORCID logo
  15. Swertz, Morris ORCID logo
  16. Wilkinson, Mark ORCID logo

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WeightNameValue
1000 Titel
  • Surveyed common data access policies preferences amongst European Reference Networks - Presentation
1000 Autor/in
  1. Cámara Ballesteros, Alberto |
  2. Benis, Nirupama |
  3. Bernabé, César |
  4. de Oliveira Coelho Henriques, Ines |
  5. Le Cornec, Clemence |
  6. Demir, Aylin |
  7. dos Santos Vieira, Bruna |
  8. Ramírez García, Jose Antonio |
  9. van der Velde, Joeri |
  10. Zhang, Shuxin |
  11. Cornet, Ronald |
  12. Jacobsen, Annika |
  13. Roos, Marco |
  14. Schaefer, Franz |
  15. Swertz, Morris |
  16. Wilkinson, Mark |
1000 Erscheinungsjahr 2023
1000 Publikationstyp
  1. Kongressschrift |
1000 Online veröffentlicht
  • 2023-03
1000 Erschienen in
1000 Übergeordneter Kongress
1000 Lizenz
1000 Verlagsversion
  • https://www.swat4ls.org/workshops/basel2023/scientific-programme-2023/ |
1000 Publikationsstatus
1000 Begutachtungsstatus
1000 Sprache der Publikation
1000 Abstract/Summary
  • 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.
1000 Sacherschließung
lokal FAIR data sharing
lokal Patient registries
lokal Rare diseases
1000 Fächerklassifikation (DDC)
1000 DOI 10.4126/FRL01-006440378 |
1000 Liste der Beteiligten
  1. https://orcid.org/0000-0001-5613-9704|https://orcid.org/0000-0002-2101-6154|https://orcid.org/0000-0003-1795-5930|https://orcid.org/0000-0002-0756-2722|https://frl.publisso.de/adhoc/uri/TGUgQ29ybmVjLCBDbGVtZW5jZQ==|https://frl.publisso.de/adhoc/uri/RGVtaXIsIEF5bGlu|https://orcid.org/0000-0001-7893-0505|https://orcid.org/0000-0003-0942-4371|https://orcid.org/0000-0002-0934-8375|https://orcid.org/0000-0003-4715-9070|https://orcid.org/0000-0002-1704-5980|https://orcid.org/0000-0003-4818-2360|https://orcid.org/0000-0002-8691-772X|https://orcid.org/0000-0001-7564-9937|https://orcid.org/0000-0002-0979-3401|https://orcid.org/0000-0001-6960-357X
1000 Label
1000 Fördernummer
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1000 Förderprogramm
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1000 Dateien
1000 Objektart article
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1000 @id frl:6440378.rdf
1000 Erstellt am 2023-02-24T11:07:53.043+0100
1000 Erstellt von 25
1000 beschreibt frl:6440378
1000 Bearbeitet von 25
1000 Zuletzt bearbeitet 2023-03-06T09:02:28.818+0100
1000 Objekt bearb. Mon Mar 06 09:02:28 CET 2023
1000 Vgl. frl:6440378
1000 Oai Id
  1. oai:frl.publisso.de:frl:6440378 |
1000 Sichtbarkeit Metadaten public
1000 Sichtbarkeit Daten public
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