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The portuguese severe asthma registry : development, features, and data sharing policies

2018Journal article Open access
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dc.contributor.authorSousa, Ana Sá
dc.contributor.authorFonseca, João Almeida
dc.contributor.authorPereira, Ana Margarida
dc.contributor.authorFerreira, Ana
dc.contributor.authorArrobas, Ana
dc.contributor.authorMendes, Ana
dc.contributor.authorDrummond, Marta
dc.contributor.authorVideira, Wanda
dc.contributor.authorCosta, Tiago
dc.contributor.authorFarinha, Pedro
dc.contributor.authorSoares, José
dc.contributor.authorRocha, Pedro
dc.contributor.authorTodo-Bom, Ana
dc.contributor.authorSokolova, Anna
dc.contributor.authorCosta, António
dc.contributor.authorFernandes, Beatriz
dc.contributor.authorLoureiro, Carla Chaves
dc.contributor.authorLongo, Cecília
dc.contributor.authorPardal, Cecília
dc.contributor.authorCosta, Célia
dc.contributor.authorCruz, Cíntia
dc.contributor.authorLoureiro, Cláudia Chaves
dc.contributor.authorLopes, Cristina
dc.contributor.authorMesquita, Duarte
dc.contributor.authorFaria, Emília
dc.contributor.authorMagalhães, Eunice
dc.contributor.authorMenezes, Fernando
dc.contributor.authorTodo-Bom, Filipa
dc.contributor.authorCarvalho, Francisca
dc.contributor.authorRegateiro, Frederico S.
dc.contributor.authorFalcão, Helena
dc.contributor.authorFernandes, Ivone
dc.contributor.authorMarques, João Gaspar
dc.contributor.authorViana, Jorge
dc.contributor.authorFerreira, José
dc.contributor.authorSilva, José Manuel
dc.contributor.authorSimão, Laura
dc.contributor.authorAlmeida, Leonor
dc.contributor.authorFernandes, Lígia
dc.contributor.authorFerreira, Lurdes
dc.contributor.authorvan Zeller, Mafalda
dc.contributor.authorQuaresma, Márcia
dc.contributor.authorCastanho, Margarida
dc.contributor.authorAndré, Natália
dc.contributor.authorCortesão, Nuno
dc.contributor.authorPinto, Paula Leiria
dc.contributor.authorPinto, Paula
dc.contributor.authorRosa, Paula
dc.contributor.authorMartins, Pedro Carreiro
dc.contributor.authorGerardo, Rita
dc.contributor.authorSilva, Rui
dc.contributor.authorLucas, Susana
dc.contributor.authorAlmeida, Teresa
dc.contributor.authorCalvo, Teresa
dc.date.accessioned2019-01-10T16:35:25Z
dc.date.available2019-01-10T16:35:25Z
dc.date.issued2018
dc.descriptionCopyright © 2018 Ana Sá-Sousa et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.pt_PT
dc.description.abstractThe Portuguese Severe Asthma Registry (Registo de Asma Grave Portugal, RAG) was developed by an open collaborative network of asthma specialists. RAG collects data from adults and pediatric severe asthma patients that despite treatment optimization and adequate management of comorbidities require step 4/5 treatment according to GINA recommendations. In this paper, we describe the development and implementation of RAG, its features, and data sharing policies. The contents and structure of RAG were defined in a multistep consensus process. A pilot version was pretested and iteratively improved. The selection of data elements for RAG considered other severe asthma registries, aiming at characterizing the patient's clinical status whilst avoiding overloading the standard workflow of the clinical appointment. Features of RAG include automatic assessment of eligibility, easy data input, and exportable data in natural language that can be pasted directly in patients' electronic health record and security features to enable data sharing (among researchers and with other international databases) without compromising patients' confidentiality. RAG is a national web-based disease registry of severe asthma patients, available at asmagrave.pt. It allows prospective clinical data collection, promotes standardized care and collaborative clinical research, and may contribute to inform evidence-based healthcare policies for severe asthma.pt_PT
dc.description.sponsorshipRAG was financed by an unrestricted grant from Novartis Farma-Produtos Farmacêuticos, S.A., which had no participation in any part of the development and implementation of the registry and has no access to the stored data for any purpose. The first author is financed by a PhD Grant (PD/BD/113665/2015) and financed by the European Social Fund and national funds of MCTES (Ministério da Ciência, Tecnologia e Ensino Superior) through FCT (Fundação para a Ciência e Tecnologia, I.P) PhD Programme Ref. PD/0003/2013-Doctoral Programme in Clinical and Health Services Research (PDICSS). Te publication of this article was supported by ERDF (European Regional Development Fund) through the operation POCI-01-0145- FEDER-007746 funded by the Programa Operacional Competitividade e Internacionalização – COMPETE2020 and by National Funds through FCT - Fundação para a Ciência e a Tecnologia within CINTESIS, R&D Unit (reference UID/IC/4255/2013).pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationBioMed Research International, vol. 2018, Article ID 1495039, 12 pages, 2018pt_PT
dc.identifier.doi10.1155/2018/1495039pt_PT
dc.identifier.issn2314-6133
dc.identifier.urihttp://hdl.handle.net/10451/36346
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherHindawi Publishing Corporationpt_PT
dc.relationPD/0003/2013pt_PT
dc.relationIdentifying people with anaphylaxis and Asthma-from criteria definition and validation to the implementation of clinical alerts in an electronic Health Record. - Contributions to identify asthma and patients with future risk of adverse outcomes
dc.relation.publisherversionhttps://www.hindawi.com/journals/bmri/pt_PT
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/pt_PT
dc.titleThe portuguese severe asthma registry : development, features, and data sharing policiespt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.awardTitleIdentifying people with anaphylaxis and Asthma-from criteria definition and validation to the implementation of clinical alerts in an electronic Health Record. - Contributions to identify asthma and patients with future risk of adverse outcomes
oaire.awardURIinfo:eu-repo/grantAgreement/FCT//PD%2FBD%2F113665%2F2015/PT
oaire.awardURIinfo:eu-repo/grantAgreement/FCT/5876/UID%2FIC%2F04255%2F2013/PT
oaire.citation.endPage12pt_PT
oaire.citation.startPage1pt_PT
oaire.citation.titleBioMed Research Internationalpt_PT
oaire.citation.volume2018pt_PT
oaire.fundingStream5876
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.identifierhttp://doi.org/10.13039/501100001871
project.funder.nameFundação para a Ciência e a Tecnologia
project.funder.nameFundação para a Ciência e a Tecnologia
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
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relation.isProjectOfPublicatione8ee2d8a-6dfe-468e-90d8-ca5eefaf36f2
relation.isProjectOfPublication.latestForDiscoverye8ee2d8a-6dfe-468e-90d8-ca5eefaf36f2

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