A Systematic Literature Review to Identify Patient Registries in Portugal
Autor(a) principal: | |
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Data de Publicação: | 2023 |
Outros Autores: | , , , , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos) |
Texto Completo: | http://scielo.pt/scielo.php?script=sci_arttext&pid=S2504-31452023000200132 |
Resumo: | Abstract Introduction: Patient registries are one of the main sources of real-world data (RWD), which enables different healthcare stakeholders to analyse and benchmark clinical practice and foster better care. Despite the growing need for RWD, the current use of patient registries in Portugal is not fully understood. This study aimed to identify and provide an overview of patient registries in Portugal. Methods: Registries identification included a systematic literature review (SLR) using PRISMA© methodology. An electronic search was conducted in Embase®, MEDLINE©, and Cochrane Ovid® software, considering a set of rules and relevant search terms. Patient registries and databases, hospital, primary healthcare, and population-based studies between January 1955 and March 2021 were considered while randomized controlled trials and transversal observational studies were excluded. A manual review for validation was performed to identify unique registries. To complement SLR, an additional hand search was conducted using the Google® search engine. A literature and website search was conducted to provide an overview of the registries identified. Results: From the 108 unique registries, 76 (70%) were classified as national and 32 (30%) as international (with data collected from the Portuguese population). Most national registries were found to be owned by medical societies and health authorities (88%) and are predominantly implemented in hospitals (82%). National registries cover 18 different medical specialities, mostly Cardiology and Oncology. Discussion: This study identified and provided an overview of the registries collecting data from the Portuguese population. The study results aim to improve the information available to promote the increased utility of RWD at both national and international levels. In the future, an easy-access and centralized repository, aggregating all patient registries, should be created in Portugal to disseminate information. Additionally, an in-depth characterization of the 76 national registries must be performed to better understand and clarify their potential and usefulness. |
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A Systematic Literature Review to Identify Patient Registries in PortugalReal-world evidenceReal-world dataPatient registriesPortugalAbstract Introduction: Patient registries are one of the main sources of real-world data (RWD), which enables different healthcare stakeholders to analyse and benchmark clinical practice and foster better care. Despite the growing need for RWD, the current use of patient registries in Portugal is not fully understood. This study aimed to identify and provide an overview of patient registries in Portugal. Methods: Registries identification included a systematic literature review (SLR) using PRISMA© methodology. An electronic search was conducted in Embase®, MEDLINE©, and Cochrane Ovid® software, considering a set of rules and relevant search terms. Patient registries and databases, hospital, primary healthcare, and population-based studies between January 1955 and March 2021 were considered while randomized controlled trials and transversal observational studies were excluded. A manual review for validation was performed to identify unique registries. To complement SLR, an additional hand search was conducted using the Google® search engine. A literature and website search was conducted to provide an overview of the registries identified. Results: From the 108 unique registries, 76 (70%) were classified as national and 32 (30%) as international (with data collected from the Portuguese population). Most national registries were found to be owned by medical societies and health authorities (88%) and are predominantly implemented in hospitals (82%). National registries cover 18 different medical specialities, mostly Cardiology and Oncology. Discussion: This study identified and provided an overview of the registries collecting data from the Portuguese population. The study results aim to improve the information available to promote the increased utility of RWD at both national and international levels. In the future, an easy-access and centralized repository, aggregating all patient registries, should be created in Portugal to disseminate information. Additionally, an in-depth characterization of the 76 national registries must be performed to better understand and clarify their potential and usefulness.Escola Nacional de Saúde Pública2023-09-01info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/articletext/htmlhttp://scielo.pt/scielo.php?script=sci_arttext&pid=S2504-31452023000200132Portuguese Journal of Public Health v.41 n.2 2023reponame:Repositório Científico de Acesso Aberto de Portugal (Repositórios Cientìficos)instname:Agência para a Sociedade do Conhecimento (UMIC) - FCT - Sociedade da Informaçãoinstacron:RCAAPenghttp://scielo.pt/scielo.php?script=sci_arttext&pid=S2504-31452023000200132Pedrosa,HugoPereira,FábioCarrilho,MagdaMartins,CatarinaMartins,RicardoCruz,Pedroinfo:eu-repo/semantics/openAccess2024-02-06T17:34:36Zoai:scielo:S2504-31452023000200132Portal AgregadorONGhttps://www.rcaap.pt/oai/openaireopendoar:71602024-03-20T02:36:31.108067Repositório 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 |
A Systematic Literature Review to Identify Patient Registries in Portugal |
title |
A Systematic Literature Review to Identify Patient Registries in Portugal |
spellingShingle |
A Systematic Literature Review to Identify Patient Registries in Portugal Pedrosa,Hugo Real-world evidence Real-world data Patient registries Portugal |
title_short |
A Systematic Literature Review to Identify Patient Registries in Portugal |
title_full |
A Systematic Literature Review to Identify Patient Registries in Portugal |
title_fullStr |
A Systematic Literature Review to Identify Patient Registries in Portugal |
title_full_unstemmed |
A Systematic Literature Review to Identify Patient Registries in Portugal |
title_sort |
A Systematic Literature Review to Identify Patient Registries in Portugal |
author |
Pedrosa,Hugo |
author_facet |
Pedrosa,Hugo Pereira,Fábio Carrilho,Magda Martins,Catarina Martins,Ricardo Cruz,Pedro |
author_role |
author |
author2 |
Pereira,Fábio Carrilho,Magda Martins,Catarina Martins,Ricardo Cruz,Pedro |
author2_role |
author author author author author |
dc.contributor.author.fl_str_mv |
Pedrosa,Hugo Pereira,Fábio Carrilho,Magda Martins,Catarina Martins,Ricardo Cruz,Pedro |
dc.subject.por.fl_str_mv |
Real-world evidence Real-world data Patient registries Portugal |
topic |
Real-world evidence Real-world data Patient registries Portugal |
description |
Abstract Introduction: Patient registries are one of the main sources of real-world data (RWD), which enables different healthcare stakeholders to analyse and benchmark clinical practice and foster better care. Despite the growing need for RWD, the current use of patient registries in Portugal is not fully understood. This study aimed to identify and provide an overview of patient registries in Portugal. Methods: Registries identification included a systematic literature review (SLR) using PRISMA© methodology. An electronic search was conducted in Embase®, MEDLINE©, and Cochrane Ovid® software, considering a set of rules and relevant search terms. Patient registries and databases, hospital, primary healthcare, and population-based studies between January 1955 and March 2021 were considered while randomized controlled trials and transversal observational studies were excluded. A manual review for validation was performed to identify unique registries. To complement SLR, an additional hand search was conducted using the Google® search engine. A literature and website search was conducted to provide an overview of the registries identified. Results: From the 108 unique registries, 76 (70%) were classified as national and 32 (30%) as international (with data collected from the Portuguese population). Most national registries were found to be owned by medical societies and health authorities (88%) and are predominantly implemented in hospitals (82%). National registries cover 18 different medical specialities, mostly Cardiology and Oncology. Discussion: This study identified and provided an overview of the registries collecting data from the Portuguese population. The study results aim to improve the information available to promote the increased utility of RWD at both national and international levels. In the future, an easy-access and centralized repository, aggregating all patient registries, should be created in Portugal to disseminate information. Additionally, an in-depth characterization of the 76 national registries must be performed to better understand and clarify their potential and usefulness. |
publishDate |
2023 |
dc.date.none.fl_str_mv |
2023-09-01 |
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://scielo.pt/scielo.php?script=sci_arttext&pid=S2504-31452023000200132 |
url |
http://scielo.pt/scielo.php?script=sci_arttext&pid=S2504-31452023000200132 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
http://scielo.pt/scielo.php?script=sci_arttext&pid=S2504-31452023000200132 |
dc.rights.driver.fl_str_mv |
info:eu-repo/semantics/openAccess |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
text/html |
dc.publisher.none.fl_str_mv |
Escola Nacional de Saúde Pública |
publisher.none.fl_str_mv |
Escola Nacional de Saúde Pública |
dc.source.none.fl_str_mv |
Portuguese Journal of Public Health v.41 n.2 2023 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 |
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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