Reuma.pt - the XXXX portuguese register.

@entity1 @entity5427 @entity627 @entity29552 @entity5144 @entity4932 @entity1691 @entity309
INTRODUCTION: Since June 2008, Portuguese rheumatologists have been collecting on a routine basis, data into the nationwide Reuma.pt, the @entity627 Portuguese Register from the Portuguese Society of Rheumatology ( @entity29552 ), which includes @entity627 @entity1 ( @entity309 - @entity309 , @entity1691 - @entity5427 , @entity5144 - PsA and @entity4932 ) receiving biological therapies or @entity1 receiving synthetic disease modifying anti- @entity627 drugs (DMARDs). The aim of this publication is to describe the structure of Reuma.pt and the population registered since June 2008. METHODS: Demographic and anthropometric data, life style habits, work status, co-morbidities, disease activity and functional assessment scores, previous and current therapies, adverse events codified by the Medical Dictionary for Regulatory Activities (MedDRA), reasons for discontinuation and laboratory measurements are registered at each visit. The platform is based on a structured electronic medical record linked to a SQL Server database. All Rheumatology Departments assigned to the Portuguese National Health Service (n=21), 2 Military Hospitals (Lisboa and Porto), 1 public-private Institution and 6 private centers adhered to the Register. Until now, 18 centers have entered data into Reuma.pt. RESULTS: By January 2011, 3438 @entity1 and 16130 visits had been registered. 2162 (63%) were @entity309 @entity1 , 700 of them treated with biological agents and 1462 with synthetic DMARDs. From the 515 (15%) @entity5427 @entity1 , 297 were medicated with biological and 218 with non-biological therapies. 293 (8%) were PsA @entity1 , 151 treated with biological drugs and 142 with other treatment strategies. 368 (11%) had the diagnosis of JIA, 68 were under biological treatment and 300 were managed with other treatment options. The register also includes 100 (3%) @entity1 with other @entity627 , submitted to treatments that required hospital day care infusions including 18 exposed to biological therapies. CONCLUSIONS: Registers are crucial to ensure correct clinical use, adequate assessment of post-marketing biological therapies' efficacy and safety, thus contributing for a better cost-benefit ratio. Reuma.pt, is a powerful and accurate tool to answer to these unmet needs. It presents a national coverage of the rheumatology centers and constitutes an invaluable resource for scientific research and to improve @entity627 @entity1 care.
