Current and future of pediatric rheumatic disease registry research(PRICURE ver.2)

  • Narazaki Hidehiko
    Patients Registration System Committee, Pediatric Rheumatology Association of Japan Department of Pediatrics, Nippon Medical School
  • Yamaguchi Ken-ichi
    Patients Registration System Committee, Pediatric Rheumatology Association of Japan Immuno-Rheumatology Center, St. Luke’s International Hospital
  • Imagawa Tomoyuki
    Patients Registration System Committee, Pediatric Rheumatology Association of Japan Department of Infectious diseases and Immunology, Kanagawa Children’s Medical Center
  • Inoue Yuzaburo
    Patients Registration System Committee, Pediatric Rheumatology Association of Japan Department of Allergy and Rheumatology, Chiba Children’s Hospital
  • Nerome Yasuhito
    Department of Pediatrics, Kagoshima University
  • Takei Syuji
    Department of Pediatrics, Kagoshima University
  • Mori Masaaki
    Department of Lifetime Clinical Immunology, Tokyo Medical and Dental University

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Other Title
  • 小児リウマチ性疾患登録(レジストリ)研究 PRICURE ver. 2 の現況と今後の展望

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(Objective) Because of the number of pediatric case with rheumatic disease are very rare, that can be experienced in one institution is limited. We think that it is necessary to conduct registry research for the diagnosis, treatment and research in the future under the initiative of the Pediatric Rheumatology Association of Japan. (Methods)This study is a retrospective observational study. Target diseases are juvenile idiopathic arthritis, systemic lupus erythematosus, juvenile dermatomyositis, Sjogren’s syndrome, mixed connective tissue disease, systemic scleroderma, etc. The database (PRICURE ver. 2) is built by FileMaker Cloud on Amazon Web Services server and can be accessed with a common Web browser via an SSL connection. (Results)There are 128 cases has been registered from 13 facilities at the end of February, 2020. (Conclusion)Because there are still few participating facilities, the number of registered cases is also small. In order to contribute to the diagnosis, treatment and research in the future, it is necessary to much more increase registries for pediatric rheumatic patients.

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