TY - JOUR
T1 - Protocol for the nationwide registry of patients with polycystic kidney disease
T2 - japanese national registry of PKD (JRP)
AU - The JRP collaborators
AU - Nakatani, Shinya
AU - Kawano, Haruna
AU - Sato, Mai
AU - Hoshino, Junichi
AU - Nishio, Saori
AU - Miura, Kenichiro
AU - Sekine, Akinari
AU - Suwabe, Tatsuya
AU - Hidaka, Sumi
AU - Kataoka, Hiroshi
AU - Ishikawa, Eiji
AU - Shimazu, Keiji
AU - Uchiyama, Kiyotaka
AU - Fujimaru, Takuya
AU - Moriyama, Tomofumi
AU - Kurashige, Mahiro
AU - Shimabukuro, Wataru
AU - Hattanda, Fumihiko
AU - Kimura, Tomoki
AU - Ushio, Yusuke
AU - Manabe, Shun
AU - Watanabe, Hirofumi
AU - Mitobe, Michihiro
AU - Seta, Koichi
AU - Shimada, Yosuke
AU - Kai, Hirayasu
AU - Katayama, Kan
AU - Ichikawa, Daisuke
AU - Hayashi, Hiroki
AU - Hanaoka, Kazushige
AU - Mochizuki, Toshio
AU - Nakanishi, Koichi
AU - Tsuchiya, Ken
AU - Horie, Shigeo
AU - Isaka, Yoshitaka
AU - Muto, Satoru
AU - Yodoshi, Toshifumi
AU - Inomata, Yukihiro
AU - Kubota, Takuo
AU - Okajima, Hideaki
AU - Inui, Ayano
AU - Maruyama, Kenichi
AU - Kise, Tomoo
AU - Miyazono, Akinori
AU - Konomoto, Takao
AU - Shiona, Shinichi
AU - Nakazato, Hitoshi
AU - Kaku, Yoshitsugu
AU - Nishiyama, Kei
AU - Ota, Toshiyuki
N1 - Publisher Copyright:
© The Author(s), under exclusive licence to Japanese Society of Nephrology 2024.
PY - 2024/10
Y1 - 2024/10
N2 - 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.
AB - 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.
KW - ADPKD
KW - ARPKD
KW - Japanese national registry
KW - JRP
UR - http://www.scopus.com/inward/record.url?scp=85202069837&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85202069837&partnerID=8YFLogxK
U2 - 10.1007/s10157-024-02509-3
DO - 10.1007/s10157-024-02509-3
M3 - Article
C2 - 38734869
AN - SCOPUS:85202069837
SN - 1342-1751
VL - 28
SP - 1004
EP - 1015
JO - Clinical and Experimental Nephrology
JF - Clinical and Experimental Nephrology
IS - 10
ER -