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Abstract Number: 119

Establishment of registry for pediatric rheumatic diseases in Japan: Pediatric Rheumatology International Collaboration Unit Registry (PRICURE) survey

Tomoyuki Imagawa1, Ken-ichi Yamaguchi2, Yuzaburo Inoue3, Hidehiko Narasaki4, Yasuhito Nerome5 and Yasuhiko Itoh4, 1Department of Infectious diseases and Immunology, Kanagawa Children’s Medical Center, Yokohama, Japan, 2Immuno-Rheumatology Center, St. Luke's International Hospital, Tokyo, Japan, 3Department of Pediatrics, Eastern Chiba Medical Center, Togane, Japan, 4Department of Pediatrics, Nippon Medical School, Tokyo, Japan, 5Department of Community-Based Medicine Education Center for Doctors in Remote Islands and Rural Areas, Kagoshima University, Kagoshima, Japan

Meeting: 2017 Pediatric Rheumatology Symposium

Keywords: pediatric rheumatology and registry

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Session Information

Date: Thursday, May 18, 2017

Title: Clinical and Therapeutic Poster Session

Session Type: Abstract Submissions

Session Time: 5:30PM-7:00PM

Background/Purpose:  To identify the number and characteristics of Japanese pediatric diseases, Pediatric Rheumatology International Collaboration Unit Registry (PRICURE) survey was established by Pediatric Rheumatology Association of Japan (PRAJ).

Methods:  For the pediatric rheumatology specialist who belongs to PRAJ (68 hospitals and medical institutes), web-based registry system was constructed. After review and approval by the ethics committee of PRAJ and each hospital, PRICURE survey has started since January 2017. The survey covered juvenile idiopathic arthritis (JIA), systemic lupus erythematosus (SLE), juvenile dermatomyositis (JDM), Sjögren’s syndrome (SS), mixed connective tissue disease (MCTD), systemic sclerosis (SSc), Behçet’s disease (BD), vasculitis syndrome and autoinflammatory diseases. Patient data included age, sex, date of disease onset, diagnosis, diagnostic criteria, treatment, complication and adverse effect.

Results:  One medical institute and 3 hospitals were accepted by each ethics committee and had started to register patients. Sixty one patients were registered initially (JIA patients 25, SLE patients 8, JDM patients 3, Sjögren’s syndrome patients 6, systemic sclerosis patients 3, Behçet’s disease patients 6, vasculitis syndrome patients 3 and autoinflammatory patients 6). Planned number of enrollment is more than 500 in first year.

Conclusion:  PRICURE survey is the exclusive survey by the pediatric rheumatologist in Japan. We hope to collaborate with other registry such as CARRA registry.


Disclosure: T. Imagawa, None; K. I. Yamaguchi, None; Y. Inoue, None; H. Narasaki, None; Y. Nerome, None; Y. Itoh, None.

To cite this abstract in AMA style:

Imagawa T, Yamaguchi KI, Inoue Y, Narasaki H, Nerome Y, Itoh Y. Establishment of registry for pediatric rheumatic diseases in Japan: Pediatric Rheumatology International Collaboration Unit Registry (PRICURE) survey [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 4). https://acrabstracts.org/abstract/establishment-of-registry-for-pediatric-rheumatic-diseases-in-japan-pediatric-rheumatology-international-collaboration-unit-registry-pricure-survey/. Accessed .
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