van Vollenhoven R F, Askling J
Rheumatology Unit, Karolinska University Hospital and Karolinska Institute, Stockholm, Sweden.
Clin Exp Rheumatol. 2005 Sep-Oct;23(5 Suppl 39):S195-200.
Patient registries provide valuable contributions to the field of rheumatology for both quality control and scientific purposes. With respect to the latter, patient registries are among the most important datasets used for longitudinal observational studies in rheumatic diseases, which are in turn an essential complement to data obtained from randomized, controlled trials. In Sweden a number of registries are available for such studies, ranging from general medical registries such as the in-patient registry, to rheumatoid arthritis (RA)-specific inception cohorts and biologics registries focusing on a specific patient population defined by a group of treatments. In recent years it has become particularly clear that questions regarding new therapies, their use in practice and their long-term safety, as well as aspects such as pharmacoeconomics, cannot fully be assessed using the data from clinical trials, and that registries are indispensible to obtain accurate answers to such questions. In this review we describe the Swedish rheumatology registries, including the Swedish RA registry and the Swedish biologics registries ARTIS (Antirheumatic Therapies Iin Sweden), SSATG (Southern Sweden Antirheumatic Therapy Group), and STURE (Stockholm Tumor Necrosis Factor-a Follow-up Registry). Data obtained from analyses based on these registries are reviewed. It is concluded that rheumatology registries are excellent tools for improving our knowledge base regarding rheumatic diseases.
患者登记册在质量控制和科学研究方面都为风湿病学领域做出了重要贡献。就后者而言,患者登记册是用于风湿性疾病纵向观察性研究的最重要数据集之一,而这些研究又是对随机对照试验所获数据的重要补充。在瑞典,有许多登记册可用于此类研究,从一般医疗登记册(如住院登记册)到类风湿关节炎(RA)特定的起始队列以及专注于由一组治疗方法定义的特定患者群体的生物制剂登记册。近年来,越来越明显的是,关于新疗法、其在实际应用中的情况及其长期安全性,以及药物经济学等方面的问题,无法仅通过临床试验数据进行全面评估,而登记册对于准确回答此类问题必不可少。在本综述中,我们描述了瑞典的风湿病登记册,包括瑞典RA登记册以及瑞典生物制剂登记册ARTIS(瑞典抗风湿疗法)、SSATG(瑞典南部抗风湿疗法组)和STURE(斯德哥尔摩肿瘤坏死因子-α随访登记册)。我们还回顾了基于这些登记册分析所获得的数据。结论是,风湿病登记册是增进我们对风湿性疾病了解的优秀工具。