ウシオ　ユウスケ   Ushio Yuusuke   潮　雄介    所属   医学部 医学科（東京女子医科大学病院）    職種   助教
論文種別	原著
言語種別	英語
査読の有無	査読なし
表題	Protocol for the nationwide registry of patients with polycystic kidney disease: japanese national registry of PKD (JRP)
掲載誌名	正式名：Clinical and experimental nephrology 略　 称：Clin Exp Nephrol ISSNコード：14377799/13421751
掲載区分	国外
巻・号・頁	pp.online
著者・共著者	Nakatani Shinya, Kawano Haruna, Sato Mai, Hoshino Junichi, Nishio Saori, Miura Kenichiro, Sekine Akinari, Suwabe Tatsuya, Hidaka Sumi, Kataoka Hiroshi, Ishikawa Eiji, Shimazu Keiji, Uchiyama Kiyotaka, Fujimaru Takuya, Moriyama Tomofumi, Kurashige Mahiro, Shimabukuro Wataru, Hattanda Fumihiko, Kimura Tomoki, Ushio Yusuke, Manabe Shun, Watanabe Hirofumi, Mitobe Michihiro, Seta Koichi, Shimada Yosuke, Kai Hirayasu, Katayama Kan, Ichikawa Daisuke, Hayashi Hiroki, Hanaoka Kazushige, Mochizuki Toshio, Nakanishi Koichi, Tsuchiya Ken, Horie Shigeo, Isaka Yoshitaka, Muto Satoru,
発行年月	2024/05/11
概要	BACKGROUND:Autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD) are major genetic polycystic kidney diseases that can progress to end-stage kidney disease (ESKD). Longitudinal data on the clinical characteristics associated with clinical outcomes in polycystic kidney disease (PKD), including the development of ESKD and cardiovascular disease (CVD) are lacking in Japan. To address this unmet need the authors are establishing a novel, web-based, Nationwide Cohort Registry Study-the Japanese Registry of PKD (JRP).METHODS:The JRP is a prospective cohort study for ADPKD (aim to recruit n = 1000 patients), and both a retrospective and prospective study for ARPKD (aim to recruit n = 100). In the prospective registry, patients will be followed-up for 10 years every 6 months and 12 months for patients with ADPKD and ARPKD, respectively. Data collection will be recorded on Research Electronic Data Capture (REDCap) starting on April 1, 2024, with recruitment ending on March 31, 2029. (jRCT 1030230618).RESULTS:Data to be collected include: baseline data, demographics, diagnostic and genetic information, radiological and laboratory findings, and therapeutic interventions. During follow-up, clinical events such as development of ESKD, hospitalization, occurrence of extra kidney complications including CVD events, and death will be recorded, as well as patient-reported health-related quality of life for patients with ADPKD.CONCLUSIONS:The JRP is the first nationwide registry study for patients with ADPKD and ARPKD in Japan, providing researchers with opportunities to advance knowledge and treatments for ADPKD and ARPKD, and to inform disease management and future clinical practice.
DOI	10.1007/s10157-024-02509-3
PMID	38734869