RegisPt: registry of registries in Portugal: design, data model, and functionalities
Autor(a) principal: | |
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Data de Publicação: | 2017 |
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/10362/112285 |
Resumo: | ABSTRACT - Introduction: The number and quality of existing patient registries are not known in Portugal. In order to improve the knowledge regarding this issue, an interactive tool (RegisPt) was developed to identify and characterize all available patient registries in our country. This article aims to describe the RegisPt design, data model, and due functionalities. Methods: RegisPt was developed in Microsoft Office Access 2010 and all variables definitions were done according to standardized international classifications. A review of the available literature and web resources was performed in order to identify all relevant patient registries. Results: The RegisPt platform is divided into 5 core modules containing comprehensive information from each patient registry (general data, registry design, characterization, effectiveness, and publications). Effectiveness is of utmost importance for health technology assessment and is divided into 2 sections: the exposure (health care service, pharmaceutical drugs, and medical devices) and the outcomes (safety, clinical, and economic). The RegisPt platform allows adding and editing registries as well as consulting all available registries in an interactive and user-friendly way, using a preferred query (e.g., registry name, institution, and therapeutic area). About 50 patient registries were identified and characterized in Portugal in accordance with the patient registry definition of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Discussion: The RegisPt is a first step to better understand and use the available resources for health research in Portugal. RegisPt can promote collaboration between researchers and registry owners and encourage the efficient use of resources and may improve the access to registries. This project may also be useful to identify therapeutic areas still lacking patient registries and to optimize existing ones in the country, by comparing registry design, quality, and functional strategies. In the future, this valuable platform may be particularly relevant for researchers and authorities aiming to carry out health technology assessment. |
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RegisPt: registry of registries in Portugal: design, data model, and functionalitiesRegisPt: registo de registos em Portugal: desenho, modelo de dados e respetivas funcionalidadesPatient registriesDatabasesEpidemiologic studiesHealth technology assessmentRegisto de doentesBases de dadosEstudos epidemiológicosAvaliação de tecnologias da saúdeABSTRACT - Introduction: The number and quality of existing patient registries are not known in Portugal. In order to improve the knowledge regarding this issue, an interactive tool (RegisPt) was developed to identify and characterize all available patient registries in our country. This article aims to describe the RegisPt design, data model, and due functionalities. Methods: RegisPt was developed in Microsoft Office Access 2010 and all variables definitions were done according to standardized international classifications. A review of the available literature and web resources was performed in order to identify all relevant patient registries. Results: The RegisPt platform is divided into 5 core modules containing comprehensive information from each patient registry (general data, registry design, characterization, effectiveness, and publications). Effectiveness is of utmost importance for health technology assessment and is divided into 2 sections: the exposure (health care service, pharmaceutical drugs, and medical devices) and the outcomes (safety, clinical, and economic). The RegisPt platform allows adding and editing registries as well as consulting all available registries in an interactive and user-friendly way, using a preferred query (e.g., registry name, institution, and therapeutic area). About 50 patient registries were identified and characterized in Portugal in accordance with the patient registry definition of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Discussion: The RegisPt is a first step to better understand and use the available resources for health research in Portugal. RegisPt can promote collaboration between researchers and registry owners and encourage the efficient use of resources and may improve the access to registries. This project may also be useful to identify therapeutic areas still lacking patient registries and to optimize existing ones in the country, by comparing registry design, quality, and functional strategies. In the future, this valuable platform may be particularly relevant for researchers and authorities aiming to carry out health technology assessment.RESUMO - Introdução: O número e a qualidade dos registos de doentes existentes em Portugal não são inteiramente conhecidos. Com o objetivo de melhorar o conhecimento nesta área, foi desenvolvida uma ferramenta interativa (RegisPt) para identificar e caracterizar todos os registos de doentes disponíveis no nosso país. Este artigo descreve a estrutura e o desenho do RegisPt, o modelo de dados recolhidos e as respetivas funcionalidades. Métodos: O RegisPt foi desenvolvido em Microsoft Office Access 2010 e todas as definições de variáveis basearam-se em classificações internacionais. Foi realizada uma revisão de literatura para identificar e caracterizar todos os registos de doentes relevantes. Resultados: A plataforma RegisPt está dividida em cinco módulos principais que contêm informações abrangentes de cada registo de doentes (Dados Gerais, Desenho do Registo, Caracterização, Efetividade e Publicações). Em particular, o módulo de Efetividade é de extrema importância para a Avaliação de Tecnologias em Saúde e está dividido em duas seções principais: Exposição (Serviço de Saúde, Medicamentos e Dispositivos Médicos) e Resultados (Segurança, Outcomes Clínicos e Económicos). A plataforma RegisPt permite adicionar e editar registos, bem como consultar todos os registos disponíveis de forma simples e interativa, através de pesquisas específicas (por exemplo, nome do registo, instituição e área terapêutica). Cerca de 50 registos de doentes foram identificados e caracterizados de acordo com a definição adotada pela International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Discussão: O RegisPt é um primeiro passo para melhor entender e utilizar os recursos disponíveis para investigação em saúde realizada em Portugal. O RegisPt poderá promover a colaboração entre investigadores e responsáveis de registos, bem como incentivar a utilização eficiente de recursos e melhorar o acesso aos registos já existentes. Este projeto poderá ainda ser útil para identificar áreas terapêuticas com lacuna de registos de doentes e para otimizar aqueles já existentes. No futuro, esta plataforma poderá ser particularmente relevante para investigadores e Autoridades para a eficiente implementação da Avaliação de Tecnologias em Saúde em Portugal.Universidade Nova de Lisboa, Escola Nacional de Saúde PúblicaRUNLaires, PedroBarros, Vitor2021-02-23T10:56:57Z2017-052017-05-01T00:00:00Zinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articleapplication/pdfhttp://hdl.handle.net/10362/112285engLaires, Pedro; Barros, Vitor - RegisPt : registry of registries in Portugal: design, data model, and functionalities = RegisPt : registo de registos em Portugal: desenho, modelo de dados e respetivas funcionalidades. Portuguese Journal of Public Health. ISSN 2504-3137. Vol. 35, Nº 2 (Maio/Agosto 2017), p. 126-1312504-313710.1159/000479778info: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:RCAAP2024-03-11T04:55:57Zoai:run.unl.pt:10362/112285Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T03:42:09.472457Repositório 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 |
RegisPt: registry of registries in Portugal: design, data model, and functionalities RegisPt: registo de registos em Portugal: desenho, modelo de dados e respetivas funcionalidades |
title |
RegisPt: registry of registries in Portugal: design, data model, and functionalities |
spellingShingle |
RegisPt: registry of registries in Portugal: design, data model, and functionalities Laires, Pedro Patient registries Databases Epidemiologic studies Health technology assessment Registo de doentes Bases de dados Estudos epidemiológicos Avaliação de tecnologias da saúde |
title_short |
RegisPt: registry of registries in Portugal: design, data model, and functionalities |
title_full |
RegisPt: registry of registries in Portugal: design, data model, and functionalities |
title_fullStr |
RegisPt: registry of registries in Portugal: design, data model, and functionalities |
title_full_unstemmed |
RegisPt: registry of registries in Portugal: design, data model, and functionalities |
title_sort |
RegisPt: registry of registries in Portugal: design, data model, and functionalities |
author |
Laires, Pedro |
author_facet |
Laires, Pedro Barros, Vitor |
author_role |
author |
author2 |
Barros, Vitor |
author2_role |
author |
dc.contributor.none.fl_str_mv |
RUN |
dc.contributor.author.fl_str_mv |
Laires, Pedro Barros, Vitor |
dc.subject.por.fl_str_mv |
Patient registries Databases Epidemiologic studies Health technology assessment Registo de doentes Bases de dados Estudos epidemiológicos Avaliação de tecnologias da saúde |
topic |
Patient registries Databases Epidemiologic studies Health technology assessment Registo de doentes Bases de dados Estudos epidemiológicos Avaliação de tecnologias da saúde |
description |
ABSTRACT - Introduction: The number and quality of existing patient registries are not known in Portugal. In order to improve the knowledge regarding this issue, an interactive tool (RegisPt) was developed to identify and characterize all available patient registries in our country. This article aims to describe the RegisPt design, data model, and due functionalities. Methods: RegisPt was developed in Microsoft Office Access 2010 and all variables definitions were done according to standardized international classifications. A review of the available literature and web resources was performed in order to identify all relevant patient registries. Results: The RegisPt platform is divided into 5 core modules containing comprehensive information from each patient registry (general data, registry design, characterization, effectiveness, and publications). Effectiveness is of utmost importance for health technology assessment and is divided into 2 sections: the exposure (health care service, pharmaceutical drugs, and medical devices) and the outcomes (safety, clinical, and economic). The RegisPt platform allows adding and editing registries as well as consulting all available registries in an interactive and user-friendly way, using a preferred query (e.g., registry name, institution, and therapeutic area). About 50 patient registries were identified and characterized in Portugal in accordance with the patient registry definition of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Discussion: The RegisPt is a first step to better understand and use the available resources for health research in Portugal. RegisPt can promote collaboration between researchers and registry owners and encourage the efficient use of resources and may improve the access to registries. This project may also be useful to identify therapeutic areas still lacking patient registries and to optimize existing ones in the country, by comparing registry design, quality, and functional strategies. In the future, this valuable platform may be particularly relevant for researchers and authorities aiming to carry out health technology assessment. |
publishDate |
2017 |
dc.date.none.fl_str_mv |
2017-05 2017-05-01T00:00:00Z 2021-02-23T10:56:57Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
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info:eu-repo/semantics/article |
format |
article |
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publishedVersion |
dc.identifier.uri.fl_str_mv |
http://hdl.handle.net/10362/112285 |
url |
http://hdl.handle.net/10362/112285 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
Laires, Pedro; Barros, Vitor - RegisPt : registry of registries in Portugal: design, data model, and functionalities = RegisPt : registo de registos em Portugal: desenho, modelo de dados e respetivas funcionalidades. Portuguese Journal of Public Health. ISSN 2504-3137. Vol. 35, Nº 2 (Maio/Agosto 2017), p. 126-131 2504-3137 10.1159/000479778 |
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info:eu-repo/semantics/openAccess |
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openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Universidade Nova de Lisboa, Escola Nacional de Saúde Pública |
publisher.none.fl_str_mv |
Universidade Nova de Lisboa, Escola Nacional de Saúde Pública |
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Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
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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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