Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases
Patient registries are key instruments aimed at a better understanding of the natural history of diseases, at assessing the effectiveness of therapeutic interventions, as well as identifying rare events or outcomes that are not captured in clinical trials. However, the potential of registries goes f...
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doaj-9f1b8db07f70454086c33394913d7ab42020-11-24T21:25:51ZengSociedade Portuguesa de ReumatologiaActa Reumatológica Portuguesa0303-464X2017-07-0120173232239AR160292Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseasesMaria José Santos0Helena Canhão1Ana Filipa Mourão2Filipa Oliveira Ramos3Cristina Ponte4Cátia Duarte5Anabela Barcelos6Fernando MartinsJosé António Melo GomesHospital Garcia de OrtaUniversidade Nova de LisboaHospital Egas MonizCentro Hospitalar Lisboa Norte, Hospital Santa MariaCentro Hospitalar Lisboa Norte, Hospital Santa MariaCentro Hospitalar e Universitário de CoimbraCentro Hospitalar Baixo VougaPatient registries are key instruments aimed at a better understanding of the natural history of diseases, at assessing the effectiveness of therapeutic interventions, as well as identifying rare events or outcomes that are not captured in clinical trials. However, the potential of registries goes far beyond these aspects. For example, registries promote the standardization of clinical practice, can also provide information on domains that are not routinely collected in clinical practice and can support decision-making. Being aware of the importance of registries, the Portuguese Society of Rheumatology developed the Rheumatic Diseases Portuguese Register- Reuma.pt - which proved to be an innovative instrument essential to a better understanding of systemic immune-mediated rheumatic diseases. Objective: To describe the contribution of Reuma.pt to the knowledge of systemic immune-mediated rheumatic diseases. Results: Reuma.pt is widely implemented, with 77 centres actively contributing to the recruitment and follow-up of patients. Reuma.pt follows in a standardized way patients with the following systemic inflammatory rheumatic diseases: rheumatoid arthritis (n=6218), psoriatic arthritis (n=1498), spondyloarthritis (n=2529), juvenile idiopathic arthritis (n =1561), autoinflammatory syndromes (n=122), systemic lupus erythematosus (n =1718), systemic sclerosis (n=180) and vasculitis (n=221). This platform is intended for use as an electronic medical record, provides standardized assessment of patients and support to the clinical decision, thereby contributing to a better quality of care of rheumatic patients. The research based on Reuma.pt identified genetic determinants of susceptibility and response to therapy, characterized in detail systemic rheumatic diseases and their long-term impact, critically appraised the performance of instruments for monitoring the disease activity, established the effectiveness and safety of biologic therapies and identified predictors of response, and proactively engaged patients in the management of their disease. Conclusion: Reuma.pt is an innovative tool, widely established in the country that contributes to a clinical practice of excellence and simultaneously to increase the knowledge of systemic immune-mediated rheumatic diseases. Additionally, Reuma.pt fosters patients’ participation in the management of the disease.http://www.actareumatologica.com/files/article/1185_reuma_pt_contribution_to_the_knowledge_of_immune_mediated_systemic_rheumatic_diseases_file.pdfrheumatic diseasesportugalregisterReuma.pt |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Maria José Santos Helena Canhão Ana Filipa Mourão Filipa Oliveira Ramos Cristina Ponte Cátia Duarte Anabela Barcelos Fernando Martins José António Melo Gomes |
spellingShingle |
Maria José Santos Helena Canhão Ana Filipa Mourão Filipa Oliveira Ramos Cristina Ponte Cátia Duarte Anabela Barcelos Fernando Martins José António Melo Gomes Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases Acta Reumatológica Portuguesa rheumatic diseases portugal register Reuma.pt |
author_facet |
Maria José Santos Helena Canhão Ana Filipa Mourão Filipa Oliveira Ramos Cristina Ponte Cátia Duarte Anabela Barcelos Fernando Martins José António Melo Gomes |
author_sort |
Maria José Santos |
title |
Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases |
title_short |
Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases |
title_full |
Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases |
title_fullStr |
Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases |
title_full_unstemmed |
Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases |
title_sort |
reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases |
publisher |
Sociedade Portuguesa de Reumatologia |
series |
Acta Reumatológica Portuguesa |
issn |
0303-464X |
publishDate |
2017-07-01 |
description |
Patient registries are key instruments aimed at a better understanding of the natural history of diseases, at assessing the effectiveness of therapeutic interventions, as well as identifying rare events or outcomes that are not captured in clinical trials. However, the potential of registries goes far beyond these aspects. For example, registries promote the standardization of clinical practice, can also provide information on domains that are not routinely collected in clinical practice and can support decision-making. Being aware of the importance of registries, the Portuguese Society of Rheumatology developed the Rheumatic Diseases Portuguese Register- Reuma.pt - which proved to be an innovative instrument essential to a better understanding of systemic immune-mediated rheumatic diseases.
Objective: To describe the contribution of Reuma.pt to the knowledge of systemic immune-mediated rheumatic diseases.
Results: Reuma.pt is widely implemented, with 77 centres actively contributing to the recruitment and follow-up of patients. Reuma.pt follows in a standardized way patients with the following systemic inflammatory rheumatic diseases: rheumatoid arthritis (n=6218), psoriatic arthritis (n=1498), spondyloarthritis (n=2529), juvenile idiopathic arthritis (n =1561), autoinflammatory syndromes (n=122), systemic lupus erythematosus (n =1718), systemic sclerosis (n=180) and vasculitis (n=221). This platform is intended for use as an electronic medical record, provides standardized assessment of patients and support to the clinical decision, thereby contributing to a better quality of care of rheumatic patients.
The research based on Reuma.pt identified genetic determinants of susceptibility and response to therapy, characterized in detail systemic rheumatic diseases and their long-term impact, critically appraised the performance of instruments for monitoring the disease activity, established the effectiveness and safety of biologic therapies and identified predictors of response, and proactively engaged patients in the management of their disease.
Conclusion: Reuma.pt is an innovative tool, widely established in the country that contributes to a clinical practice of excellence and simultaneously to increase the knowledge of systemic immune-mediated rheumatic diseases. Additionally, Reuma.pt fosters patients’ participation in the management of the disease. |
topic |
rheumatic diseases portugal register Reuma.pt |
url |
http://www.actareumatologica.com/files/article/1185_reuma_pt_contribution_to_the_knowledge_of_immune_mediated_systemic_rheumatic_diseases_file.pdf |
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