The Portuguese Severe Asthma Registry
Autor(a) principal: | |
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Data de Publicação: | 2018 |
Outros Autores: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | https://doi.org/10.1155/2018/1495039 |
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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The Portuguese Severe Asthma RegistryDevelopment, Features, and Data Sharing PoliciesBiochemistry, Genetics and Molecular Biology(all)Immunology and Microbiology(all)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.NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM)Centro de Estudos de Doenças Crónicas (CEDOC)RUNSá-Sousa, AnaFonseca, João AlmeidaPereira, Ana MargaridaFerreira, AnaArrobas, AnaMendes, AnaDrummond, MartaVideira, WandaCosta, TiagoFarinha, PedroSoares, JoséRocha, PedroTodo-Bom, AnaSokolova, AnnaCosta, AntónioFernandes, BeatrizChaves Loureiro, CarlaLongo, CecíliaPardal, CecíliaCosta, CéliaCruz, CíntiaLoureiro, Cláudia ChavesLopes, CristinaMesquita, DuarteFaria, EmíliaMagalhães, EuniceMenezes, FernandoTodo-Bom, FilipaCarvalho, FranciscaRegateiro, Frederico S.Falcão, HelenaFernandes, IvoneGaspar-Marques, JoãoViana, JorgeFerreira, JoséSilva, José ManuelSimão, LauraAlmeida, LeonorFernandes, LígiaFerreira, LurdesVan Zeller, MafaldaQuaresma, MárciaCastanho, MargaridaAndré, NatáliaCortesão, NunoLeiria-Pinto, PaulaPinto, PaulaRosa, PaulaCarreiro-Martins, PedroGerardo, RitaSilva, RuiLucas, SusanaAlmeida, TeresaCalvo, Teresa2018-12-28T23:31:07Z2018-112018-11-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttps://doi.org/10.1155/2018/1495039eng2314-6133PURE: 10982984http://www.scopus.com/inward/record.url?scp=85058335902&partnerID=8YFLogxKhttps://doi.org/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:RCAAP2024-03-11T04:27:01Zoai:run.unl.pt:10362/55914Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:32:51.852482Repositório 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 |
spellingShingle |
The Portuguese Severe Asthma Registry Sá-Sousa, Ana Biochemistry, Genetics and Molecular Biology(all) Immunology and Microbiology(all) |
title_short |
The Portuguese Severe Asthma Registry |
title_full |
The Portuguese Severe Asthma Registry |
title_fullStr |
The Portuguese Severe Asthma Registry |
title_full_unstemmed |
The Portuguese Severe Asthma Registry |
title_sort |
The Portuguese Severe Asthma Registry |
author |
Sá-Sousa, Ana |
author_facet |
Sá-Sousa, Ana Fonseca, João Almeida Pereira, Ana Margarida Ferreira, Ana Arrobas, Ana Mendes, Ana Drummond, Marta Videira, Wanda Costa, Tiago Farinha, Pedro Soares, José Rocha, Pedro Todo-Bom, Ana Sokolova, Anna Costa, António Fernandes, Beatriz Chaves Loureiro, Carla Longo, Cecília Pardal, Cecília Costa, Célia Cruz, Cíntia Loureiro, Cláudia Chaves Lopes, Cristina Mesquita, Duarte Faria, Emília Magalhães, Eunice Menezes, Fernando Todo-Bom, Filipa Carvalho, Francisca Regateiro, Frederico S. Falcão, Helena Fernandes, Ivone Gaspar-Marques, João Viana, Jorge Ferreira, José Silva, José Manuel Simão, Laura Almeida, Leonor Fernandes, Lígia Ferreira, Lurdes Van Zeller, Mafalda Quaresma, Márcia Castanho, Margarida André, Natália Cortesão, Nuno Leiria-Pinto, Paula Pinto, Paula Rosa, Paula Carreiro-Martins, Pedro Gerardo, Rita Silva, Rui Lucas, Susana Almeida, Teresa Calvo, Teresa |
author_role |
author |
author2 |
Fonseca, João Almeida Pereira, Ana Margarida Ferreira, Ana Arrobas, Ana Mendes, Ana Drummond, Marta Videira, Wanda Costa, Tiago Farinha, Pedro Soares, José Rocha, Pedro Todo-Bom, Ana Sokolova, Anna Costa, António Fernandes, Beatriz Chaves Loureiro, Carla Longo, Cecília Pardal, Cecília Costa, Célia Cruz, Cíntia Loureiro, Cláudia Chaves Lopes, Cristina Mesquita, Duarte Faria, Emília Magalhães, Eunice Menezes, Fernando Todo-Bom, Filipa Carvalho, Francisca Regateiro, Frederico S. Falcão, Helena Fernandes, Ivone Gaspar-Marques, João Viana, Jorge Ferreira, José Silva, José Manuel Simão, Laura Almeida, Leonor Fernandes, Lígia Ferreira, Lurdes Van Zeller, Mafalda Quaresma, Márcia Castanho, Margarida André, Natália Cortesão, Nuno Leiria-Pinto, Paula Pinto, Paula Rosa, Paula Carreiro-Martins, Pedro Gerardo, Rita Silva, Rui Lucas, Susana Almeida, Teresa Calvo, Teresa |
author2_role |
author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author author 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 |
NOVA Medical School|Faculdade de Ciências Médicas (NMS|FCM) Centro de Estudos de Doenças Crónicas (CEDOC) RUN |
dc.contributor.author.fl_str_mv |
Sá-Sousa, Ana Fonseca, João Almeida Pereira, Ana Margarida Ferreira, Ana Arrobas, Ana Mendes, Ana Drummond, Marta Videira, Wanda Costa, Tiago Farinha, Pedro Soares, José Rocha, Pedro Todo-Bom, Ana Sokolova, Anna Costa, António Fernandes, Beatriz Chaves Loureiro, Carla Longo, Cecília Pardal, Cecília Costa, Célia Cruz, Cíntia Loureiro, Cláudia Chaves Lopes, Cristina Mesquita, Duarte Faria, Emília Magalhães, Eunice Menezes, Fernando Todo-Bom, Filipa Carvalho, Francisca Regateiro, Frederico S. Falcão, Helena Fernandes, Ivone Gaspar-Marques, João Viana, Jorge Ferreira, José Silva, José Manuel Simão, Laura Almeida, Leonor Fernandes, Lígia Ferreira, Lurdes Van Zeller, Mafalda Quaresma, Márcia Castanho, Margarida André, Natália Cortesão, Nuno Leiria-Pinto, Paula Pinto, Paula Rosa, Paula Carreiro-Martins, Pedro Gerardo, Rita Silva, Rui Lucas, Susana Almeida, Teresa Calvo, Teresa |
dc.subject.por.fl_str_mv |
Biochemistry, Genetics and Molecular Biology(all) Immunology and Microbiology(all) |
topic |
Biochemistry, Genetics and Molecular Biology(all) Immunology and Microbiology(all) |
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 |
2018-12-28T23:31:07Z 2018-11 2018-11-01T00:00:00Z |
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 |
https://doi.org/10.1155/2018/1495039 |
url |
https://doi.org/10.1155/2018/1495039 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
2314-6133 PURE: 10982984 http://www.scopus.com/inward/record.url?scp=85058335902&partnerID=8YFLogxK https://doi.org/10.1155/2018/1495039 |
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info:eu-repo/semantics/openAccess |
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openAccess |
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application/pdf |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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