Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases

Maria José Santos, H. Canhão, A. F. Mourão, F. O. Ramos, C. Ponte, C. Duarte, A. Barcelos, F. Martins, J. A. Melo Gomes

Research output: Contribution to journalReview article

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Abstract

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 ins - trument 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 inflam matory rheumatic diseases: rheumatoid arthritis (n=6.218), pso - riatic arthritis (n=1.498), spondyloarthritis (n=2.529), juvenile idiopathic arthritis (n =1.561), auto-inflammatory syndromes (n=122), systemic lupus erythematosus (n =1.718), 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 acti - vity, established the effectiveness and safety of biolo gic 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 rheuma - tic diseases. Additionally, Reuma.pt fosters patients' participation in the management of the disease.

Original languageEnglish
Pages (from-to)232-239
Number of pages8
JournalActa reumatologica portuguesa
Volume2017
Issue number3
Publication statusPublished - 2017

Fingerprint

Rheumatic Diseases
Registries
Disease Management
Clinical Decision Support Systems
Patient Participation
Tics
Juvenile Arthritis
Systemic Scleroderma
Electronic Health Records
Quality of Health Care
Rheumatology
Genetic Predisposition to Disease
Vasculitis
Systemic Lupus Erythematosus
Arthritis
Rheumatoid Arthritis
Decision Making
Therapeutics
Clinical Trials
Safety

Keywords

  • Portugal
  • Register
  • Reuma.pt
  • Rheumatic diseases

Cite this

Santos, M. J., Canhão, H., Mourão, A. F., Ramos, F. O., Ponte, C., Duarte, C., ... Melo Gomes, J. A. (2017). Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases. Acta reumatologica portuguesa, 2017(3), 232-239.
Santos, Maria José ; Canhão, H. ; Mourão, A. F. ; Ramos, F. O. ; Ponte, C. ; Duarte, C. ; Barcelos, A. ; Martins, F. ; Melo Gomes, J. A. / Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases. In: Acta reumatologica portuguesa. 2017 ; Vol. 2017, No. 3. pp. 232-239.
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Santos, MJ, Canhão, H, Mourão, AF, Ramos, FO, Ponte, C, Duarte, C, Barcelos, A, Martins, F & Melo Gomes, JA 2017, 'Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases', Acta reumatologica portuguesa, vol. 2017, no. 3, pp. 232-239.

Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases. / Santos, Maria José; Canhão, H.; Mourão, A. F.; Ramos, F. O.; Ponte, C.; Duarte, C.; Barcelos, A.; Martins, F.; Melo Gomes, J. A.

In: Acta reumatologica portuguesa, Vol. 2017, No. 3, 2017, p. 232-239.

Research output: Contribution to journalReview article

TY - JOUR

T1 - Reuma.pt contribution to the knowledge of immune-mediated systemic rheumatic diseases

AU - Santos, Maria José

AU - Canhão, H.

AU - Mourão, A. F.

AU - Ramos, F. O.

AU - Ponte, C.

AU - Duarte, C.

AU - Barcelos, A.

AU - Martins, F.

AU - Melo Gomes, J. A.

PY - 2017

Y1 - 2017

N2 - 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 ins - trument 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 inflam matory rheumatic diseases: rheumatoid arthritis (n=6.218), pso - riatic arthritis (n=1.498), spondyloarthritis (n=2.529), juvenile idiopathic arthritis (n =1.561), auto-inflammatory syndromes (n=122), systemic lupus erythematosus (n =1.718), 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 acti - vity, established the effectiveness and safety of biolo gic 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 rheuma - tic diseases. Additionally, Reuma.pt fosters patients' participation in the management of the disease.

AB - 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 ins - trument 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 inflam matory rheumatic diseases: rheumatoid arthritis (n=6.218), pso - riatic arthritis (n=1.498), spondyloarthritis (n=2.529), juvenile idiopathic arthritis (n =1.561), auto-inflammatory syndromes (n=122), systemic lupus erythematosus (n =1.718), 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 acti - vity, established the effectiveness and safety of biolo gic 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 rheuma - tic diseases. Additionally, Reuma.pt fosters patients' participation in the management of the disease.

KW - Portugal

KW - Register

KW - Reuma.pt

KW - Rheumatic diseases

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M3 - Review article

VL - 2017

SP - 232

EP - 239

JO - Acta reumatologica portuguesa

JF - Acta reumatologica portuguesa

SN - 0303-464X

IS - 3

ER -