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

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Abstract

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.

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Acknowledgements

This study was supported in part by a Grant-in-Aid for Intractable Renal Diseases Research, Research on rare and intractable diseases, Health and Labour Sciences Research Grants from the Ministry of Health, Labour and Welfare of Japan. The authors acknowledge valuable contributions of the following collaborators and Dr. Keiko Ota at the Department of Center for Clinical Research and Innovation, Osaka Metropolitan University.

The JRP collaborators: Satoru Muto, Haruna Kawano, Amane Endo, Tomoki Kimura, Yosuke Shimada, Juntendo University Hospital; Junichi Hoshino, Ken Tsuchiya, Hiroshi Kataoka, Shiho Makabe, Shun Manabe, Yusuke Ushio, Kenichiro Miura, Tokyo Women's Medical University Hospital; Shinya Nakatani, Osaka Metropolitan University; Koichi Nakanishi, Wataru Shimabukuro, University of the Ryukyus Hospital; Mai Sato, National Center for Child Health and Development; Saori Nishio, Fumihiko Hattanda, Hokkaido University Hospital; Tomofumi Moriyama,Seiji Tanaka, Tomofumi Moriyama, Kurume University Hospital; Kiyotaka Uchiyama, International University of Health and Welfare Narita Hospital; Daisuke Ichikawa, St. Marianna University School of Medicine Hospital; Hirayasu Kai, University of Tsukuba Hospital; Kazushige Hanaoka, Mahiro Kurashige, The Jikei University Hospital; Tadashi Otsuka, Hirofumi Watanabe, Takeshi Yamada, Niigata University Medical and Dental Hospital; Hiroki Hayashi, Fujita Health University Hospital; Kan Katayama, Mie University Hospital; Keiji Shimazu, Osaka Saiseikai Nakatsu Hospital; Koichi Seta, National Hospital Organization Kyoto Medical Center; Eiji Ishikawa, Saiseikai Matsusaka Genera Hospital; Sumi Hidaka, Shonan Kamakura General Hospital; Michihiro Mitobe, Takeda General Hospital; Takehiko Wada, Tatsuya Suwabe, Akinari Sekine, Toranomon Hospital; Toshio Mochizuki, PKD Nephrology Clinic; Takuya Fujimaru, Luke's International Hospital;Yoshinobu Nagaoka, Sapporo Medical University Hospital; Tanaka Hiroshi, Hirosaki University Hospital; Noriko Sugawara, Tohoku University Hospital; Hiroaki Tamura, Akita University Hospital; Ogino Daisuke, Yamagata University Hospital; Yuji Kano, Dokyo Medical University Hospital; Shuichiro Fujinaga, Saitama Prefectural Children’s Medical Center; Yuko Akioka, Saitama Medical University Hospital; Ryugo Hiramoto, Matsudo City General Hospital; Ken Kawamura, Seirei Sakura Citizen Hospital; Yuko Hamasaki, Toho University Omori Medical Center; Riku Hamada, Tokyo Metropolitan Children's Medical Center; Takeshi Yanagihara, Nippon Medical School Musashikosugi Hospital; Aya Inaba, Yokohama City University Medical Center; Hirotsugu Kitayama, Shizuoka Children’s Hospital; Masaki Yamamoto, Seirei Hamamatsu General Hospital; Yoshimitsu Goto, Japanese Red Cross Nagoya Daini Hospital; Naoya Fujita, Aichi Children's Health and Medical Center; Eiji Matsukuma, Gifu Prefectural General Medical Center; Toshihiro Sawai, Shiga University of Medical Science Hospital; Rika Fujimaru, Osaka City General Hospital; Kaori Fujiwara, Osaka Women's and Children's Hospital; Masashi Nishida, Japanese Red Cross Kyoto Daiichi Hospital; Takahisa Yoshikawa, Kyoto University Hospital; Kandai Nozu, Kobe University Hospital; Hiroshi Kaito, Hyogo Prefectural Kobe Children's Hospital; Naohiro Kamiyoshi, Japanese Red Cross Society Himeji Hospital; Tomoaki Ishikawa, Nara Medical University Hospital; Yuko Shima, Wakayama Medical University Hospital; Toshiyuki Ota, Hiroshima Prefectural Hospital; Kei Nishiyama, Kyushu University Hospital; Yoshitsugu Kaku, Fukuoka Children's Hospital Masafumi Oka, Saga University Hospital;, Hitoshi Nakazato, Kumamoto, University Hospital; Hideki Ban, Kumamoto Red Cross Hospital; Shinichi Shiona, Oita Prefectural Hospital; Takao Konomoto, University of Miyazaki Hospital; Akinori Miyazono, Kagoshima University Hospital; Tomoo Kise, Nanbu Medical Center, Children’s Medical Center; Kenichi Maruyama, Gunma Children’s Medical Center; Ayano Inui, Saiseikai Yokohamashi Tobu Hospital; Hideaki Okajima, Kanazawa Medical University Hospital; Takuo Kubota, Yoshitaka Isaka, Osaka University Hospital; Yukihiro Inomata, Kumamoto Rosai Hospital; and Toshifumi Yodoshi, Okinawa Chubu Hospital.

Author information

Authors and Affiliations

  1. Department of Metabolism, Endocrinology and Molecular Medicine, Osaka Metropolitan University Graduate School of Medicine, Osaka, Japan

    Shinya Nakatani

  2. Department of Urology, Juntendo University Graduate School of Medicine, Tokyo, Japan

    Haruna Kawano, Tomoki Kimura & Shigeo Horie

  3. Department of Advanced Informatics for Genetic Disease, Juntendo University Graduate School of Medicine, Tokyo, Japan

    Haruna Kawano

  4. Division of Nephrology and Rheumatology, National Center for Child Health and Development, Tokyo, Japan

    Mai Sato

  5. Department of Nephrology, Tokyo Women’s Medical University, Tokyo, Japan

    Junichi Hoshino, Hiroshi Kataoka, Yusuke Ushio & Shun Manabe

  6. Department of Rheumatology, Endocrinology and Nephrology, Faculty of Medicine and Graduate School of Medicine, Hokkaido University, Sapporo, Japan

    Saori Nishio & Fumihiko Hattanda

  7. Department of Pediatric Nephrology, Tokyo Women’s Medical University, Tokyo, Japan

    Kenichiro Miura

  8. Nephrology Center, Toranomon Hospital, Tokyo, Japan

    Akinari Sekine & Tatsuya Suwabe

  9. Kidney Disease and Transplant Center, Shonan Kamakura General Hospital, Kanagawa, Japan

    Sumi Hidaka

  10. Department of Nephrology, Saiseikai Matsusaka General Hospital, Mie, Japan

    Eiji Ishikawa

  11. Department of Nephrology, Osaka Saiseikai Nakatsu Hospital, Osaka, Japan

    Keiji Shimazu

  12. Department of Nephrology, International University of Health and Welfare Narita Hospital, Chiba, Japan

    Kiyotaka Uchiyama

  13. Department of Nephrology, St. Luke’s International Hospital, Tokyo, Japan

    Takuya Fujimaru

  14. Division of Nephrology, Department of Medicine, Kurume University School of Medicine, Fukuoka, Japan

    Tomofumi Moriyama

  15. Division of Nephrology and Hypertension, Department of Internal Medicine, The Jikei University School of Medicine, Tokyo, Japan

    Mahiro Kurashige

  16. Department of Child Health and Welfare (Pediatrics), Graduate School of Medicine, University of the Ryukyus, Okinawa, Japan

    Wataru Shimabukuro & Koichi Nakanishi

  17. Division of Clinical Nephrology and Rheumatology, Kidney Research Center, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan

    Hirofumi Watanabe

  18. Department of Nephrology, Takeda General Hospital, Fukushima, Japan

    Michihiro Mitobe

  19. Department of Nephrology, National Hospital Organization Kyoto Medical Center, Kyoto, Japan

    Koichi Seta

  20. Intelligent Systems Laboratory, SECOM CO., LTD, Mitaka, Tokyo, Japan

    Yosuke Shimada

  21. Infection Control Science, Juntendo University Graduate School, Bunkyo, Tokyo, Japan

    Yosuke Shimada

  22. Ibaraki Clinical Education and Training Center, Institute of Medicine, University of Tsukuba Ibaraki, Tsukuba, Japan

    Hirayasu Kai

  23. Department of Cardiology and Nephrology, Mie University Graduate School of Medicine, Mie, Japan

    Kan Katayama

  24. Department of Nephrology and Hypertension, St Marianna University School of Medicine, Kanagawa, Japan

    Daisuke Ichikawa

  25. Department of Nephrology, Fujita Health University School of Medicine, Aichi, Japan

    Hiroki Hayashi

  26. Department of General Internal Medicine, School of Medicine, Daisan Hospital The Jikei University, Tokyo, Japan

    Kazushige Hanaoka

  27. PKD Nephrology Clinic, Tokyo, Japan

    Toshio Mochizuki

  28. Department of Blood Purification, Tokyo Women’s Medical University, Tokyo, Japan

    Ken Tsuchiya

  29. Department of Nephrology, Osaka University Graduate School of Medicine, Suita, Japan

    Yoshitaka Isaka

  30. Department of Urology, Juntendo University Nerima Hospital, 3-1-10, Takanodai, Nerima-ku, Tokyo, 177-8521, Japan

    Satoru Muto

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  1. Shinya Nakatani
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  2. Haruna Kawano
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  3. Mai Sato
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  4. Junichi Hoshino
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  10. Hiroshi Kataoka
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  11. Eiji Ishikawa
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  12. Keiji Shimazu
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  13. Kiyotaka Uchiyama
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  14. Takuya Fujimaru
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  15. Tomofumi Moriyama
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  17. Wataru Shimabukuro
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  18. Fumihiko Hattanda
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  19. Tomoki Kimura
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  21. Shun Manabe
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  22. Hirofumi Watanabe
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  23. Michihiro Mitobe
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  25. Yosuke Shimada
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  26. Hirayasu Kai
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  27. Kan Katayama
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  33. Ken Tsuchiya
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  34. Shigeo Horie
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  35. Yoshitaka Isaka
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  36. Satoru Muto
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Consortia

The JRP collaborators

  • Satoru Muto
  • , Haruna Kawano
  • , Amane Endo
  • , Tomoki Kimura
  • , Yosuke Shimada
  • , Junichi Hoshino
  • , Ken Tsuchiya
  • , Hiroshi Kataoka
  • , Shiho Makabe
  • , Shun Manabe
  • , Yusuke Ushio
  • , Kenichiro Miura
  • , Shinya Nakatani
  • , Koichi Nakanishi
  • , Wataru Shimabukuro
  • , Mai Sato
  • , Saori Nishio
  • , Fumihiko Hattanda
  • , Tomofumi Moriyama
  • , Seiji Tanaka
  • , Tomofumi Moriyama
  • , Kiyotaka Uchiyama
  • , Daisuke Ichikawa
  • , Hirayasu Kai
  • , Kazushige Hanaoka
  • , Mahiro Kurashige
  • , Tadashi Otsuka
  • , Hirofumi Watanabe
  • , Takeshi Yamada
  • , Hiroki Hayashi
  • , Kan Katayama
  • , Keiji Shimazu
  • , Koichi Seta
  • , Eiji Ishikawa
  • , Sumi Hidaka
  • , Michihiro Mitobe
  • , Takehiko Wada
  • , Tatsuya Suwabe
  • , Akinari Sekine
  • , Toshio Mochizuki
  • , Takuya Fujimaru
  • , 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
  • , Yoshitaka Isaka
  • , Yukihiro Inomata
  •  & Toshifumi Yodoshi

Corresponding author

Correspondence to Satoru Muto.

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Conflict of interest

All the authors have declared no competing interest.

Ethical approval

This study will be conducted in accordance with the 1964 Declaration of Helsinki, and the Ethical Guidelines for Medical and Health Research Involving Human Subjects by the Ministry of Health, Labor and Welfare and Ministry of Education, Japan (original version 2016, which was modified in 2017). The study protocol was reviewed and approved by the Ethics Committee, Juntendo University, Tokyo, Japan (Approval No. E23-0140), and was registered at Japan Registry of Clinical Trials (jRCT 1030230618).

Informed consent

Informed consent or assent (for minors) is to be obtained from all individual patients included in the study. An opt-out option is given for ARPKD patients who have been treated in the past and transferred to other hospitals, or who have died, as explained in the instructions posted on the website of the institution.

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Nakatani, S., Kawano, H., Sato, M. et al. Protocol for the nationwide registry of patients with polycystic kidney disease: japanese national registry of PKD (JRP). Clin Exp Nephrol (2024). https://doi.org/10.1007/s10157-024-02509-3

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