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

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

Shinya Nakatani, Haruna Kawano, Mai Sato, Junichi Hoshino, Saori Nishio, Kenichiro Miura, Akinari Sekine, Tatsuya Suwabe, Sumi Hidaka, Hiroshi Kataoka, …
Clinical and experimental nephrology, Vol.28(10), pp.1004-1015
10/2024
DOI: 10.1007/s10157-024-02509-3
PMID: 38734869

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Abstract

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). 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). 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. 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.
 Registries Adult East Asian People Female Humans Japan - epidemiology Kidney Failure, Chronic - epidemiology Male Middle Aged Polycystic Kidney, Autosomal Dominant - complications Polycystic Kidney, Autosomal Dominant - epidemiology Polycystic Kidney, Autosomal Dominant - therapy Polycystic Kidney, Autosomal Recessive - epidemiology Polycystic Kidney, Autosomal Recessive - therapy Prospective Studies Retrospective Studies

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