Evidence map›Paper›PMID 38734869›Full record

ArticleClinical and experimental nephrology2024

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 and 27 more

Abstract read
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In one paragraph

Article in Clinical and experimental nephrology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

37 authors.

Shinya NakataniDepartment of Metabolism, Endocrinology and Molecular Medicine, Osaka Metropolitan University Graduate School of Medicine, Osaka, Japan.ORCID http://orcid.org/0000-0001-5302-3634
Haruna KawanoDepartment of Urology, Juntendo University Graduate School of Medicine, Tokyo, Japan.
Mai SatoDivision of Nephrology and Rheumatology, National Center for Child Health and Development, Tokyo, Japan.
Junichi HoshinoDepartment of Nephrology, Tokyo Women's Medical University, Tokyo, Japan.
Saori NishioDepartment of Rheumatology, Endocrinology and Nephrology, Faculty of Medicine and Graduate School of Medicine, Hokkaido University, Sapporo, Japan.
Kenichiro MiuraDepartment of Pediatric Nephrology, Tokyo Women's Medical University, Tokyo, Japan.
Akinari SekineNephrology Center, Toranomon Hospital, Tokyo, Japan.
Tatsuya SuwabeNephrology Center, Toranomon Hospital, Tokyo, Japan.
Sumi HidakaKidney Disease and Transplant Center, Shonan Kamakura General Hospital, Kanagawa, Japan.
Hiroshi KataokaDepartment of Nephrology, Tokyo Women's Medical University, Tokyo, Japan.
Eiji IshikawaDepartment of Nephrology, Saiseikai Matsusaka General Hospital, Mie, Japan.
Keiji ShimazuDepartment of Nephrology, Osaka Saiseikai Nakatsu Hospital, Osaka, Japan.
Kiyotaka UchiyamaDepartment of Nephrology, International University of Health and Welfare Narita Hospital, Chiba, Japan.
Takuya FujimaruDepartment of Nephrology, St. Luke's International Hospital, Tokyo, Japan.
Tomofumi MoriyamaDivision of Nephrology, Department of Medicine, Kurume University School of Medicine, Fukuoka, Japan.
Mahiro KurashigeDivision of Nephrology and Hypertension, Department of Internal Medicine, The Jikei University School of Medicine, Tokyo, Japan.
Wataru ShimabukuroDepartment of Child Health and Welfare (Pediatrics), Graduate School of Medicine, University of the Ryukyus, Okinawa, Japan.
Fumihiko HattandaDepartment of Rheumatology, Endocrinology and Nephrology, Faculty of Medicine and Graduate School of Medicine, Hokkaido University, Sapporo, Japan.
Tomoki KimuraDepartment of Urology, Juntendo University Graduate School of Medicine, Tokyo, Japan.
Yusuke UshioDepartment of Nephrology, Tokyo Women's Medical University, Tokyo, Japan.
Shun ManabeDepartment of Nephrology, Tokyo Women's Medical University, Tokyo, Japan.
Hirofumi WatanabeDivision of Clinical Nephrology and Rheumatology, Kidney Research Center, Niigata University Graduate School of Medical and Dental Sciences, Niigata, Japan.
Michihiro MitobeDepartment of Nephrology, Takeda General Hospital, Fukushima, Japan.
Koichi SetaDepartment of Nephrology, National Hospital Organization Kyoto Medical Center, Kyoto, Japan.
Yosuke ShimadaIntelligent Systems Laboratory, SECOM CO., LTD, Mitaka, Tokyo, Japan.
Hirayasu KaiIbaraki Clinical Education and Training Center, Institute of Medicine, University of Tsukuba Ibaraki, Tsukuba, Japan.
Kan KatayamaDepartment of Cardiology and Nephrology, Mie University Graduate School of Medicine, Mie, Japan.
Daisuke IchikawaDepartment of Nephrology and Hypertension, St Marianna University School of Medicine, Kanagawa, Japan.
Hiroki HayashiDepartment of Nephrology, Fujita Health University School of Medicine, Aichi, Japan.
Kazushige HanaokaDepartment of General Internal Medicine, School of Medicine, Daisan Hospital The Jikei University, Tokyo, Japan.
Toshio MochizukiPKD Nephrology Clinic, Tokyo, Japan.
Koichi NakanishiDepartment of Child Health and Welfare (Pediatrics), Graduate School of Medicine, University of the Ryukyus, Okinawa, Japan.
Ken TsuchiyaDepartment of Blood Purification, Tokyo Women's Medical University, Tokyo, Japan.
Shigeo HorieDepartment of Urology, Juntendo University Graduate School of Medicine, Tokyo, Japan.
Yoshitaka IsakaDepartment of Nephrology, Osaka University Graduate School of Medicine, Suita, Japan.
Satoru MutoDepartment of Urology, Juntendo University Nerima Hospital, 3-1-10, Takanodai, Nerima-ku, Tokyo, 177-8521, Japan. s-muto@juntendo.ac.jp.
JRP collaborators

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAutosomal 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).

methodsThe 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).

resultsData 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.

conclusionsThe 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.

Indexed as

Polycystic Kidney, Autosomal DominantRegistriesAdultEast Asian PeopleFemaleHumansJapanKidney Failure, ChronicMaleMiddle AgedPolycystic Kidney, Autosomal RecessiveProspective StudiesRetrospective StudiesADPKDARPKDJapanese national registryJRP

Identifiers

PMID38734869

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.