The Portuguese Severe Asthma Registry

Detalhes bibliográficos
Autor(a) principal: Sá-Sousa, Ana
Data de Publicação: 2018
Outros Autores: 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
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.
id RCAP_3c3c9b5ce06bd06f35f8511b27695a8d
oai_identifier_str oai:run.unl.pt:10362/55914
network_acronym_str RCAP
network_name_str Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)
repository_id_str 7160
spelling 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
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)
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
repository.mail.fl_str_mv
_version_ 1799137950301159424