The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing Policies
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: | 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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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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1799130397681909760 |