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.
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 rheumaticpatients. 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.
Authors: Zara Izadi; Milena A Gianfrancesco; Alfredo Aguirre; Anja Strangfeld; Elsa F Mateus; Kimme L Hyrich; Laure Gossec; Loreto Carmona; Saskia Lawson-Tovey; Lianne Kearsley-Fleet; Martin Schaefer; Andrea M Seet; Gabriela Schmajuk; Lindsay Jacobsohn; Patricia Katz; Stephanie Rush; Samar Al-Emadi; Jeffrey A Sparks; Tiffany Y-T Hsu; Naomi J Patel; Leanna Wise; Emily Gilbert; Alí Duarte-García; Maria O Valenzuela-Almada; Manuel F Ugarte-Gil; Sandra Lúcia Euzébio Ribeiro; Adriana de Oliveira Marinho; Lilian David de Azevedo Valadares; Daniela Di Giuseppe; Rebecca Hasseli; Jutta G Richter; Alexander Pfeil; Tim Schmeiser; Carolina A Isnardi; Alvaro A Reyes Torres; Gelsomina Alle; Verónica Saurit; Anna Zanetti; Greta Carrara; Julien Labreuche; Thomas Barnetche; Muriel Herasse; Samira Plassart; Maria José Santos; Ana Maria Rodrigues; Philip C Robinson; Pedro M Machado; Emily Sirotich; Jean W Liew; Jonathan S Hausmann; Paul Sufka; Rebecca Grainger; Suleman Bhana; Wendy Costello; Zachary S Wallace; Jinoos Yazdany Journal: ACR Open Rheumatol Date: 2022-07-22
Authors: Cristina Ponte; Nikita Khmelinskii; Vítor Teixeira; Karine Luz; Daniela Peixoto; Marília Rodrigues; Mariana Luís; Lídia Teixeira; Sandra Sousa; Nathalie Madeira; Joana A Aleixo; Teresa Pedrosa; Sofia Serra; Raquel Campanilho-Marques; Walter Castelão; Ana Cordeiro; Inês Cordeiro; Sílvia Fernandes; Carla Macieira; Pedro Madureira; Armando Malcata; Romana Vieira; Fernando Martins; Graça Sequeira; Jaime C Branco; Lúcia Costa; José Vaz Patto; José Canas da Silva; José A Pereira da Silva; Carmo Afonso; Helena Canhão; Maria J Santos; Raashid A Luqmani; João E Fonseca Journal: Orphanet J Rare Dis Date: 2020-05-05 Impact factor: 4.123