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

Detalhes bibliográficos
Autor(a) principal: Sá-Sousa A1, A
Data de Publicação: 2018
Outros Autores: Fonseca, JA, Pereira, AM, Ferreira, A, Arrobas, A, Mendes, A, Drummond, M, Videira, W, Costa, T, Farinha, P, Soares, J, Rocha, P, Todo-Bom, A, Sokolova, A, Costa, A, Fernandes, B, Loureiro, C, Longo, C, Pardal, C, Costa, C, et al.
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10400.10/2077
Resumo: The 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.
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spelling The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing PoliciesAsthmaRegistriesPortugalThe 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.Hindawi Publishing CorporationRepositório do Hospital Prof. Doutor Fernando FonsecaSá-Sousa A1, AFonseca, JAPereira, AMFerreira, AArrobas, AMendes, ADrummond, MVideira, WCosta, TFarinha, PSoares, JRocha, PTodo-Bom, ASokolova, ACosta, AFernandes, BLoureiro, CLongo, CPardal, CCosta, C, et al.2019-01-17T15:43:18Z2018-01-01T00:00:00Z2018-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.10/2077engBiomed Res Int. 2018 Nov 21;2018:1495039.2314-614110.1155/2018/1495039info:eu-repo/semantics/openAccessreponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAP2022-09-20T15:52:47Zoai:repositorio.hff.min-saude.pt:10400.10/2077Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-19T15:53:04.584158Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãofalse
dc.title.none.fl_str_mv The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
title The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
spellingShingle The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
Sá-Sousa A1, A
Asthma
Registries
Portugal
title_short The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
title_full The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
title_fullStr The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
title_full_unstemmed The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
title_sort The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
author Sá-Sousa A1, A
author_facet Sá-Sousa A1, A
Fonseca, JA
Pereira, AM
Ferreira, A
Arrobas, A
Mendes, A
Drummond, M
Videira, W
Costa, T
Farinha, P
Soares, J
Rocha, P
Todo-Bom, A
Sokolova, A
Costa, A
Fernandes, B
Loureiro, C
Longo, C
Pardal, C
Costa, C, et al.
author_role author
author2 Fonseca, JA
Pereira, AM
Ferreira, A
Arrobas, A
Mendes, A
Drummond, M
Videira, W
Costa, T
Farinha, P
Soares, J
Rocha, P
Todo-Bom, A
Sokolova, A
Costa, A
Fernandes, B
Loureiro, C
Longo, C
Pardal, C
Costa, C, et al.
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Repositório do Hospital Prof. Doutor Fernando Fonseca
dc.contributor.author.fl_str_mv Sá-Sousa A1, A
Fonseca, JA
Pereira, AM
Ferreira, A
Arrobas, A
Mendes, A
Drummond, M
Videira, W
Costa, T
Farinha, P
Soares, J
Rocha, P
Todo-Bom, A
Sokolova, A
Costa, A
Fernandes, B
Loureiro, C
Longo, C
Pardal, C
Costa, C, et al.
dc.subject.por.fl_str_mv Asthma
Registries
Portugal
topic Asthma
Registries
Portugal
description The 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.
publishDate 2018
dc.date.none.fl_str_mv 2018-01-01T00:00:00Z
2018-01-01T00:00:00Z
2019-01-17T15:43:18Z
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://hdl.handle.net/10400.10/2077
url http://hdl.handle.net/10400.10/2077
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv Biomed Res Int. 2018 Nov 21;2018:1495039.
2314-6141
10.1155/2018/1495039
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Hindawi Publishing Corporation
publisher.none.fl_str_mv Hindawi Publishing Corporation
dc.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron:RCAAP
instname_str Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
instacron_str RCAAP
institution RCAAP
reponame_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
collection Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository.name.fl_str_mv Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação
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