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/10451/36346 |
Resumo: | Copyright © 2018 Ana Sá-Sousa et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
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The portuguese severe asthma registry : development, features, and data sharing policiesCopyright © 2018 Ana Sá-Sousa et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.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.RAG was financed by an unrestricted grant from Novartis Farma-Produtos Farmacêuticos, S.A., which had no participation in any part of the development and implementation of the registry and has no access to the stored data for any purpose. The first author is financed by a PhD Grant (PD/BD/113665/2015) and financed by the European Social Fund and national funds of MCTES (Ministério da Ciência, Tecnologia e Ensino Superior) through FCT (Fundação para a Ciência e Tecnologia, I.P) PhD Programme Ref. PD/0003/2013-Doctoral Programme in Clinical and Health Services Research (PDICSS). Te publication of this article was supported by ERDF (European Regional Development Fund) through the operation POCI-01-0145- FEDER-007746 funded by the Programa Operacional Competitividade e Internacionalização – COMPETE2020 and by National Funds through FCT - Fundação para a Ciência e a Tecnologia within CINTESIS, R&D Unit (reference UID/IC/4255/2013).Hindawi Publishing CorporationRepositório da Universidade de LisboaSousa, Ana SáFonseca, João AlmeidaPereira, Ana MargaridaFerreira, AnaArrobas, AnaMendes, AnaDrummond, MartaVideira, WandaCosta, TiagoFarinha, PedroSoares, JoséRocha, PedroTodo-Bom, AnaSokolova, AnnaCosta, AntónioFernandes, BeatrizLoureiro, Carla ChavesLongo, CecíliaPardal, CecíliaCosta, CéliaCruz, CíntiaLoureiro, Cláudia ChavesLopes, CristinaMesquita, DuarteFaria, EmíliaMagalhães, EuniceMenezes, FernandoTodo-Bom, FilipaCarvalho, FranciscaRegateiro, Frederico S.Falcão, HelenaFernandes, IvoneMarques, João GasparViana, JorgeFerreira, JoséSilva, José ManuelSimão, LauraAlmeida, LeonorFernandes, LígiaFerreira, Lurdesvan Zeller, MafaldaQuaresma, MárciaCastanho, MargaridaAndré, NatáliaCortesão, NunoPinto, Paula LeiriaPinto, PaulaRosa, PaulaMartins, Pedro CarreiroGerardo, RitaSilva, RuiLucas, SusanaAlmeida, TeresaCalvo, Teresa2019-01-10T16:35:25Z20182018-01-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10451/36346engBioMed Research International, vol. 2018, Article ID 1495039, 12 pages, 20182314-613310.1155/2018/1495039info: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:RCAAP2024-11-20T17:46:47Zoai:repositorio.ul.pt:10451/36346Portal AgregadorONGhttps://www.rcaap.pt/oai/openairemluisa.alvim@gmail.comopendoar:71602024-11-20T17:46:47Repositório 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 Sousa, Ana Sá |
| 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 |
Sousa, Ana Sá |
| author_facet |
Sousa, Ana Sá 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 Loureiro, Carla Chaves 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 Marques, João Gaspar 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 Pinto, Paula Leiria Pinto, Paula Rosa, Paula Martins, Pedro Carreiro 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 Loureiro, Carla Chaves 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 Marques, João Gaspar 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 Pinto, Paula Leiria Pinto, Paula Rosa, Paula Martins, Pedro Carreiro 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 |
Repositório da Universidade de Lisboa |
| dc.contributor.author.fl_str_mv |
Sousa, Ana Sá 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 Loureiro, Carla Chaves 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 Marques, João Gaspar 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 Pinto, Paula Leiria Pinto, Paula Rosa, Paula Martins, Pedro Carreiro Gerardo, Rita Silva, Rui Lucas, Susana Almeida, Teresa Calvo, Teresa |
| description |
Copyright © 2018 Ana Sá-Sousa et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
| publishDate |
2018 |
| dc.date.none.fl_str_mv |
2018 2018-01-01T00:00:00Z 2019-01-10T16:35:25Z |
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info:eu-repo/semantics/publishedVersion |
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info:eu-repo/semantics/article |
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article |
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publishedVersion |
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http://hdl.handle.net/10451/36346 |
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http://hdl.handle.net/10451/36346 |
| dc.language.iso.fl_str_mv |
eng |
| language |
eng |
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BioMed Research International, vol. 2018, Article ID 1495039, 12 pages, 2018 2314-6133 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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Hindawi Publishing Corporation |
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Hindawi Publishing Corporation |
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reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação instacron:RCAAP |
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Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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RCAAP |
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RCAAP |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) - Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informação |
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mluisa.alvim@gmail.com |
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