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Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies

2023-07-27Journal article Open access
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dc.contributor.authorClaridge, Hugh
dc.contributor.authorTan, Joachim
dc.contributor.authorLoane, Maria
dc.contributor.authorGarne, Ester
dc.contributor.authorBarisic, Ingeborg
dc.contributor.authorCavero-Carbonell, Clara
dc.contributor.authorMatias Dias, Carlos
dc.contributor.authorGatt, Miriam
dc.contributor.authorJordan, Susan
dc.contributor.authorKhoshnood, Babak
dc.contributor.authorKiuru-Kuhlefelt, Sonja
dc.contributor.authorKlungsoyr, Kari
dc.contributor.authorMokoroa Carollo, Olatz
dc.contributor.authorNelen, Vera
dc.contributor.authorNeville, Amanda J.
dc.contributor.authorPierini, Anna
dc.contributor.authorRandrianaivo, Hanitra
dc.contributor.authorRissmann, Anke
dc.contributor.authorTucker, David
dc.contributor.authorde Walle, Hermien
dc.contributor.authorWertelecki, Wladimir
dc.contributor.authorMorris, Joan K.
dc.date.accessioned2024-02-20T13:22:02Z
dc.date.available2024-02-20T13:22:02Z
dc.date.issued2023-07-27
dc.description.abstractIntroduction: Linking healthcare data sets can create valuable resources for research, particularly when investigating rare exposures or outcomes. However, across Europe, the permissions processes required to access data can be complex. This paper documents the processes required by the EUROlinkCAT study investigators to research the health and survival of children with congenital anomalies in Europe. Methods: Eighteen congenital anomaly registries in 14 countries provided information on all the permissions required to perform surveillance of congenital anomalies and to link their data on live births with available vital statistics and healthcare databases for research. Small number restrictions imposed by data providers were also documented. Results: The permissions requirements varied substantially, with certain registries able to conduct congenital anomaly surveillance as part of national or regional healthcare provision, while others were required to obtain ethics approvals or informed consent. Data linkage and analysis for research purposes added additional layers of complexity for registries, with some required to obtain several permissions, including ethics approvals to link the data. Restrictions relating to small numbers often resulted in a registry's data on specific congenital anomalies being unusable. Conclusion: The permissions required to obtain and link data on children with congenital anomalies varied greatly across Europe. The variation and complexity present a significant obstacle to the use of such data, especially in large data linkage projects. Furthermore, small number restrictions severely limited the research that could be performed for children with specific rare congenital anomalies.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationBMJ Open. 2023 Jul 27;13(7):e071687. doi: 10.1136/bmjopen-2023-071687pt_PT
dc.identifier.doi10.1136/bmjopen-2023-071687pt_PT
dc.identifier.issn2044-6055
dc.identifier.urihttp://hdl.handle.net/10400.18/9128
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherBMJpt_PT
dc.relation.publisherversionhttps://bmjopen.bmj.com/content/13/7/e071687.longpt_PT
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.subjectCongenital Anomaliespt_PT
dc.subjectData Linkagept_PT
dc.subjectRegistriespt_PT
dc.subjectRegistry of Congenital Anomaliespt_PT
dc.subjectEpidemiologypt_PT
dc.subjectChildpt_PT
dc.subjectPublic Healthpt_PT
dc.subjectEthicspt_PT
dc.subjectEuropept_PT
dc.subjectEstados de Saúde e de Doençapt_PT
dc.titleEthics and legal requirements for data linkage in 14 European countries for children with congenital anomaliespt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.issue7pt_PT
oaire.citation.startPagee071687pt_PT
oaire.citation.titleBMJ Openpt_PT
oaire.citation.volume13pt_PT
person.familyNameMatias Dias
person.givenNameCarlos
person.identifier.ciencia-id6311-6117-ADEB
person.identifier.orcid0000-0002-0206-5874
person.identifier.ridI-6335-2012
person.identifier.scopus-author-id23103292400
rcaap.embargofctAcesso de acordo com a política editorial da revista.pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublicationfe9524e7-fc22-42f6-8eca-ab6a513ddd6b
relation.isAuthorOfPublication.latestForDiscoveryfe9524e7-fc22-42f6-8eca-ab6a513ddd6b

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