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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.authorSá-Sousa A1, A
dc.contributor.authorFonseca, JA
dc.contributor.authorPereira, AM
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.authorLoureiro, C
dc.contributor.authorLongo, C
dc.contributor.authorPardal, C
dc.contributor.authorCosta, C, et al.
dc.date.accessioned2019-01-17T15:43:18Z
dc.date.available2019-01-17T15:43:18Z
dc.date.issued2018
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.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationBiomed Res Int. 2018 Nov 21;2018:1495039.pt_PT
dc.identifier.doi10.1155/2018/1495039pt_PT
dc.identifier.issn2314-6141
dc.identifier.urihttp://hdl.handle.net/10400.10/2077
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherHindawi Publishing Corporationpt_PT
dc.relation.publisherversionhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6280304/pdf/BMRI2018-1495039.pdfpt_PT
dc.subjectAsthmapt_PT
dc.subjectRegistriespt_PT
dc.subjectPortugal
dc.titleThe Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policiespt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.conferencePlaceNew Yorkpt_PT
oaire.citation.titleBioMed Research Internationalpt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT

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