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Update of the japanese national registry of pediatric rheumatic disease
Pediatric Rheumatology volume 12, Article number: P294 (2014)
We, Pediatric Rheumatology Association of Japan (PRAJ), have set up new online national registry of pediatric rheumatic diseases.
We report the first several months of enrollment to PRICURE (Pediatric Rheumatology International Collaboration Unit Registry).
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.
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.
We hope that this registry contribute to the development of clinical research in the field of pediatric rheumatology.
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This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
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Yamagchi, KI., Nerome, Y., Imagawa, T. et al. Update of the japanese national registry of pediatric rheumatic disease. Pediatr Rheumatol 12 (Suppl 1), P294 (2014). https://doi.org/10.1186/1546-0096-12-S1-P294
- Systemic Lupus Erythematosus
- Juvenile Idiopathic Arthritis
- Rheumatic Disease