Committee on Patient Registries System, Pediatric Rheumatology Association of Japan, Kyoto, Japan.
Department of Pediatrics, Nippon Medical School, Tokyo, Japan.
Mod Rheumatol. 2023 Aug 25;33(5):1021-1029. doi: 10.1093/mr/roac112.
Although epidemiological surveys of paediatric rheumatic diseases in Japan have been conducted, they were single surveys with no continuity. This is the first report of the Pediatric Rheumatology Association of Japan registry database, which was established to continuously collect data for paediatric rheumatic diseases.
Pediatric Rheumatology International Collaborate Unit Registry version 2 (PRICUREv2) is a registry database established by the Pediatric Rheumatology Association of Japan. The registry data were analysed for the age of onset, time to diagnosis, sex differences, seasonality, and other factors.
Our data showed the same trend regarding rates of paediatric rheumatic diseases reported in Japan and other countries. The age of onset was lower in juvenile idiopathic arthritis (JIA) and juvenile dermatomyositis and higher in systemic lupus erythematosus and Sjögren's syndrome. The time to diagnosis was relatively short in JIA and systemic lupus erythematosus but longer in juvenile dermatomyositis and Sjögren's syndrome. Rheumatoid factor-positive polyarticular JIA showed a seasonality cluster with regard to onset.
PRICUREv2 aided the retrieval and evaluation of current epidemiological information on patients with paediatric rheumatic diseases. It is expected that the data collection will be continued and will be useful for expanding research in Japan.
尽管日本已经开展了儿科风湿性疾病的流行病学调查，但这些调查都是单一的，没有连续性。这是日本儿科风湿病协会登记数据库的第一份报告，该数据库旨在持续收集儿科风湿病的数据。
儿科风湿病国际合作单位登记册第 2 版（PRICUREv2）是由日本儿科风湿病协会建立的登记册数据库。对发病年龄、诊断时间、性别差异、季节性等因素进行了登记数据的分析。
我们的数据显示了日本和其他国家报告的儿科风湿性疾病发病率的相同趋势。幼年特发性关节炎（JIA）和幼年皮肌炎的发病年龄较低，而系统性红斑狼疮和干燥综合征的发病年龄较高。JIA 和系统性红斑狼疮的诊断时间相对较短，而幼年皮肌炎和干燥综合征的诊断时间较长。类风湿因子阳性多关节型 JIA 的发病具有季节性聚集。
PRICUREv2 有助于检索和评估当前关于儿科风湿性疾病患者的流行病学信息。预计数据收集将继续进行，并将有助于在日本开展研究。
