Repository logo
 
Publication

The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies

2018-11-21Journal article Open access
Simple item page
dc.contributor.authorSá-Sousa, A.
dc.contributor.authorFonseca, J.
dc.contributor.authorPereira, A.
dc.contributor.authorFerreira, A.
dc.contributor.authorArrobas, A.
dc.contributor.authorMendes, A.
dc.contributor.authorDrummond, M.
dc.contributor.authorVideira, W.
dc.contributor.authorCosta, T.
dc.contributor.authorFarinha, P.
dc.contributor.authorSoares, J.
dc.contributor.authorRocha, P.
dc.contributor.authorTodo-Bom, A.
dc.contributor.authorSokolova, A.
dc.contributor.authorCosta, A.
dc.contributor.authorFernandes, B.
dc.contributor.authorChaves Loureiro, C.
dc.contributor.authorLongo, C.
dc.contributor.authorPardal, C.
dc.contributor.authorCosta, C.
dc.contributor.authorCruz, C.
dc.contributor.authorLoureiro, C.
dc.contributor.authorLopes, C.
dc.contributor.authorMesquita, D.
dc.contributor.authorFaria, E.
dc.contributor.authorMagalhães, E.
dc.contributor.authorMenezes, F.
dc.contributor.authorTodo-Bom, F.
dc.contributor.authorCarvalho, F.
dc.contributor.authorRegateiro, F.
dc.contributor.authorFalcao, H.
dc.contributor.authorFernandes, I.
dc.contributor.authorGaspar-Marques, J.
dc.contributor.authorViana, J.
dc.contributor.authorFerreira, J.
dc.contributor.authorSilva, J.
dc.contributor.authorSimão, L.
dc.contributor.authorAlmeida, L.
dc.contributor.authorFernandes, L.
dc.contributor.authorFerreira, L.
dc.contributor.authorvan Zeller, M.
dc.contributor.authorQuaresma, M.
dc.contributor.authorCastanho, M.
dc.contributor.authorAndré, N.
dc.contributor.authorCortesão, N.
dc.contributor.authorLeiria-Pinto, P.
dc.contributor.authorPinto, P.
dc.contributor.authorRosa, P.
dc.contributor.authorCarreiro-Martins, P.
dc.contributor.authorGerardo, R.
dc.contributor.authorSilva, R.
dc.contributor.authorLucas, S.
dc.contributor.authorAlmeida, T.
dc.contributor.authorCalvo, T.
dc.date.accessioned2019-07-17T14:00:15Z
dc.date.available2019-07-17T14:00:15Z
dc.date.issued2018-11-21
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.sponsorshipThe authors thank all members of the REAG (Rede de Especialistas em Asma Grave), namely, Ana Morete, Ana Sofia Barroso, António Reis, Aurora Carvalho, Carmen Botelho, Catarina Ferreira, Cláudia Pinto, Dolores Moniz, Elza Tomás, Emília Alvares, Eugénia Almeida, Filipe Inácio, Isabel Carrapatoso, Isabel Pereira, Jorge Romariz, José Pedro Moreira da Silva, Leonor Cunha, Luísa Barata, Luísa Geraldes, Luísa Semedo, Madalena Emiliano, Manuel Barbosa, Margarida Raposo, Maria José Silvestre, Mariana Mendes, Marta Dias Sousa, Nuno Sousa, Orlando Santos, Paula Duarte, Rosário Ferreira, Sofia Furtado, and Vítor Teixeira. RAG 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). The 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 Res Int. 2018 Nov 21;2018:1495039pt_PT
dc.identifier.doi10.1155/2018/1495039pt_PT
dc.identifier.issn2314-6133
dc.identifier.issn2314-6141
dc.identifier.urihttp://hdl.handle.net/10400.16/2268
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherHindawipt_PT
dc.relation.publisherversionhttps://www.hindawi.com/journals/bmri/2018/1495039/pt_PT
dc.subjectRegistriespt_PT
dc.titleThe Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policiespt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.conferencePlaceUnited States of Americapt_PT
oaire.citation.endPage12pt_PT
oaire.citation.startPage1495039pt_PT
oaire.citation.titleBioMed Research Internationalpt_PT
oaire.citation.volume2018pt_PT
person.familyNameGonçalves
person.givenNameHelena
person.identifier.orcid0000-0002-4503-4138
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT
relation.isAuthorOfPublicationd6c061f0-cce0-4acb-99a2-9c59182f2383
relation.isAuthorOfPublication.latestForDiscoveryd6c061f0-cce0-4acb-99a2-9c59182f2383

Files

Original bundle
Now showing 1 - 1 of 1
Thumbnail Image
Name:
The Portuguese Severe Asthma Registry.pdf
Size:
4.26 MB
Format:
Adobe Portable Document Format
Download
License bundle
Now showing 1 - 1 of 1
No Thumbnail Available
Name:
license.txt
Size:
1.35 KB
Format:
Item-specific license agreed upon to submission
Description:
Download

Collections

SPM - Artigos publicados em revistas indexadas na Pubmed/Medline