Update of the japanese national registry of pediatric rheumatic disease

Abstract

Pediatric Rheumatology 2014, 12(Suppl 1):P294 Introduction: We, Pediatric Rheumatology Association of Japan (PRAJ), have set up new online national registry of pediatric rheumatic diseases. Objectives: We report the first several months of enrollment to PRICURE (Pediatric Rheumatology International Collaboration Unit Registry). Methods: Professor Shuji TAKEI, the former chairman of PRAJ had ordered his working group to set up a new registry system in 2012. Ethical issues about the registry in which we use clinical information were discussed by ethics committee of PRAJ and it had been approved in 2013. We started to collected basic information (e.g. name of rheumatic disease, age of onset, sex, clinical course) and further information (e.g. clinical symptoms, laboratory examination abnormalities, radiological examination abnormalities, treatment, complications) by web-based way in spring 2014. Results: In the end of May 2014, 394 cases had been registered in the PRICURE. The number of cases of each diseases are as follow, Juvenile Idiopathic Arthritis 174, Systemic Lupus Erythematosus 65, Juvenile Dermatomyositis 43, Sjogren syndrome 14, Mixed Connective Tissue Disease 29, Systemic Sclerosis 12, Behcet's Disease 8, Vasculitis 16, Autoinflammatory Syndromes 1, Fibromyalgia 38. Conclusion: We hope that this registry contribute to the development of clinical research in the field of pediatric rheumatology.