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A111‐a: Setting Up of Japanese Online Registry of Pediatric Rheumatic Disease
Author(s) -
Yamaguchi Kenichi,
Nerome Yasuhito,
Imagawa Tomoyuki
Publication year - 2014
Publication title -
arthritis and rheumatology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 4.106
H-Index - 314
eISSN - 2326-5205
pISSN - 2326-5191
DOI - 10.1002/art.38532
Subject(s) - medicine , rheumatic disease , pediatrics , disease
Background/Purpose: Performing quality clinical and translational research in pediatric rheumatic diseases (eg. Juvenile Idiopathic Arthritis (JIA), Child onset Systemic Lupus Erythematosus (cSLE) and Juvenile Dermatomyositis (JDM)) had been difficult due the rarity of these diseases. Methods: Professor Takei, the former chairman of Pediatric Rheumatology Association of Japan (PRAJ), had ordered his working group to set up a new registry system in 2012. We, working group, have set up Japanese online registry for pediatric rheumatic disease in 2014 and have named it as Pediatric Rheumatology International Collaboration Unit Registry (PRICURE). Results: Under this registry, PRAJ will collect basic information (e.g. age of onset, sex, symptoms, major complication, main treatment) about these diseases (JIA, SLE, JDM, Sjogren syndrome, Mixed Connective Tissue Disease, Systemic Sclerosis, Behcet's disease, Vasculitis, Autoinflammatory syndromes, Fibromyalgia). Conclusion: We had set up new registry of pediatric rheumatic diseases. We will show initial data from this registry here.