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

Detalhes bibliográficos
Autor(a) principal: Sá-Sousa, 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, Chaves Loureiro, C, Longo, C, Pardal, C, Costa, C, Cruz, C, Loureiro, CC, Lopes, C, Mesquita, D, Faria, E, Magalhães, E, Menezes, F, Todo-Bom, F, Carvalho, F, Regateiro, FS, Falcão, H, Fernandes, I, Gaspar-Marques, J, Viana, J, Ferreira, J, Silva, JM, Simão, L, Almeida, L, Fernandes, L, Ferreira, L, van Zeller, M, Quaresma, M, Castanho, M, André, N, Cortesão, N, Leiria-Pinto, P, Pinto, P, Rosa, P, Carreiro-Martins, P, Gerardo, R, Silva, R, Lucas, S, Almeida, T, Calvo, T
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
Texto Completo: http://hdl.handle.net/10400.4/2351
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 PoliciesAsma/epidemiologiaRegistosThe 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.RIHUCSá-Sousa, AFonseca, JAPereira, AMFerreira, AArrobas, AMendes, ADrummond, MVideira, WCosta, TFarinha, PSoares, JRocha, PTodo-Bom, ASokolova, ACosta, AFernandes, BChaves Loureiro, CLongo, CPardal, CCosta, CCruz, CLoureiro, CCLopes, CMesquita, DFaria, EMagalhães, EMenezes, FTodo-Bom, FCarvalho, FRegateiro, FSFalcão, HFernandes, IGaspar-Marques, JViana, JFerreira, JSilva, JMSimão, LAlmeida, LFernandes, LFerreira, Lvan Zeller, MQuaresma, MCastanho, MAndré, NCortesão, NLeiria-Pinto, PPinto, PRosa, PCarreiro-Martins, PGerardo, RSilva, RLucas, SAlmeida, TCalvo, T2024-02-20T14:56:13Z20182018-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10400.4/2351engBiomed Res Int . 2018 Nov 21:2018:1495039.10.1155/2018/1495039info: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:RCAAP2024-02-22T08:49:17Zoai:rihuc.huc.min-saude.pt:10400.4/2351Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:10:45.016169Repositório 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, A
Asma/epidemiologia
Registos
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, A
author_facet Sá-Sousa, 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
Chaves Loureiro, C
Longo, C
Pardal, C
Costa, C
Cruz, C
Loureiro, CC
Lopes, C
Mesquita, D
Faria, E
Magalhães, E
Menezes, F
Todo-Bom, F
Carvalho, F
Regateiro, FS
Falcão, H
Fernandes, I
Gaspar-Marques, J
Viana, J
Ferreira, J
Silva, JM
Simão, L
Almeida, L
Fernandes, L
Ferreira, L
van Zeller, M
Quaresma, M
Castanho, M
André, N
Cortesão, N
Leiria-Pinto, P
Pinto, P
Rosa, P
Carreiro-Martins, P
Gerardo, R
Silva, R
Lucas, S
Almeida, T
Calvo, T
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
Chaves Loureiro, C
Longo, C
Pardal, C
Costa, C
Cruz, C
Loureiro, CC
Lopes, C
Mesquita, D
Faria, E
Magalhães, E
Menezes, F
Todo-Bom, F
Carvalho, F
Regateiro, FS
Falcão, H
Fernandes, I
Gaspar-Marques, J
Viana, J
Ferreira, J
Silva, JM
Simão, L
Almeida, L
Fernandes, L
Ferreira, L
van Zeller, M
Quaresma, M
Castanho, M
André, N
Cortesão, N
Leiria-Pinto, P
Pinto, P
Rosa, P
Carreiro-Martins, P
Gerardo, R
Silva, R
Lucas, S
Almeida, T
Calvo, T
author2_role author
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dc.contributor.none.fl_str_mv RIHUC
dc.contributor.author.fl_str_mv Sá-Sousa, 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
Chaves Loureiro, C
Longo, C
Pardal, C
Costa, C
Cruz, C
Loureiro, CC
Lopes, C
Mesquita, D
Faria, E
Magalhães, E
Menezes, F
Todo-Bom, F
Carvalho, F
Regateiro, FS
Falcão, H
Fernandes, I
Gaspar-Marques, J
Viana, J
Ferreira, J
Silva, JM
Simão, L
Almeida, L
Fernandes, L
Ferreira, L
van Zeller, M
Quaresma, M
Castanho, M
André, N
Cortesão, N
Leiria-Pinto, P
Pinto, P
Rosa, P
Carreiro-Martins, P
Gerardo, R
Silva, R
Lucas, S
Almeida, T
Calvo, T
dc.subject.por.fl_str_mv Asma/epidemiologia
Registos
topic Asma/epidemiologia
Registos
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
2018-01-01T00:00:00Z
2024-02-20T14:56:13Z
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/10400.4/2351
url http://hdl.handle.net/10400.4/2351
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv Biomed Res Int . 2018 Nov 21:2018:1495039.
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.source.none.fl_str_mv reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
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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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