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Protocol for the nationwide registry of patients with polycystic kidney disease: japanese national registry of PKD (JRP)

  • 期刊论文

  • 发表日期：

    2024年5月11日

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  • Shinya Nakatani,
  • Haruna Kawano,
  • Mai Sato,
  • Junichi Hoshino,
  • Saori Nishio,
  • Kenichiro Miura,
  • Akinari Sekine,
  • Tatsuya Suwabe,
  • Sumi Hidaka,
  • Hiroshi Kataoka,
  • Eiji Ishikawa,
  • Keiji Shimazu,
  • Kiyotaka Uchiyama,
  • Takuya Fujimaru,
  • Tomofumi Moriyama,
  • Mahiro Kurashige,
  • Wataru Shimabukuro,
  • Fumihiko Hattanda,
  • Tomoki Kimura,
  • Yusuke Ushio,
  • Shun Manabe,
  • Hirofumi Watanabe,
  • Michihiro Mitobe,
  • Koichi Seta,
  • Yosuke Shimada,
  • Hirayasu Kai,
  • Kan Katayama,
  • Daisuke Ichikawa,
  • Hiroki Hayashi,
  • Kazushige Hanaoka,
  • Toshio Mochizuki,
  • Koichi Nakanishi,
  • Ken Tsuchiya,
  • Shigeo Horie,
  • Yoshitaka Isaka,
  • Satoru Muto,
  • Amane Endo,
  • Shiho Makabe,
  • Seiji Tanaka,
  • Tadashi Otsuka,
  • Takeshi Yamada,
  • Takehiko Wada,
  • Yoshinobu Nagaoka,
  • Tanaka Hiroshi,
  • Noriko Sugawara,
  • Hiroaki Tamura,
  • Ogino Daisuke,
  • Yuji Kano,
  • Shuichiro Fujinaga,
  • Yuko Akioka,
  • Ryugo Hiramoto,
  • Ken Kawamura,
  • Yuko Hamasaki,
  • Riku Hamada,
  • Takeshi Yanagihara,
  • Aya Inaba,
  • Hirotsugu Kitayama,
  • Masaki Yamamoto,
  • Yoshimitsu Goto,
  • Naoya Fujita,
  • Eiji Matsukuma,
  • Toshihiro Sawai,
  • Rika Fujimaru,
  • Masashi Nishida,
  • Takahisa Yoshikawa,
  • Kandai Nozu,
  • Hiroshi Kaito,
  • Naohiro Kamiyoshi,
  • Tomoaki Ishikawa,
  • Yuko Shima,
  • Toshiyuki Ota,
  • Kei Nishiyama,
  • Yoshitsugu Kaku,
  • Hitoshi Nakazato,
  • Shinichi Shiona,
  • Takao Konomoto,
  • Akinori Miyazono,
  • Tomoo Kise,
  • Kenichi Maruyama,
  • Ayano Inui,
  • Hideaki Okajima,
  • Takuo Kubota,
  • Yukihiro Inomata,
  • Toshifumi Yodoshi

摘要

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.