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Published in: BMC Nephrology 1/2016

Open Access 01-12-2016 | Research article

International Network of Chronic Kidney Disease cohort studies (iNET-CKD): a global network of chronic kidney disease cohorts

Authors: Thomas Dienemann, Naohiko Fujii, Paula Orlandi, Lisa Nessel, Susan L. Furth, Wendy E. Hoy, Seiichi Matsuo, Gert Mayer, Shona Methven, Franz Schaefer, Elke S. Schaeffner, Laura Solá, Bénédicte Stengel, Christoph Wanner, Luxia Zhang, Adeera Levin, Kai-Uwe Eckardt, Harold I. Feldman

Published in: BMC Nephrology | Issue 1/2016

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Abstract

Background

Chronic kidney disease (CKD) is a global health burden, yet it is still underrepresented within public health agendas in many countries. Studies focusing on the natural history of CKD are challenging to design and conduct, because of the long time-course of disease progression, a wide variation in etiologies, and a large amount of clinical variability among individuals with CKD. With the difference in health-related behaviors, healthcare delivery, genetics, and environmental exposures, this variability is greater across countries than within one locale and may not be captured effectively in a single study.

Methods

Studies were invited to join the network. Prerequisites for membership included: 1) observational designs with a priori hypotheses and defined study objectives, patient-level information, prospective data acquisition and collection of bio-samples, all focused on predialysis CKD patients; 2) target sample sizes of 1,000 patients for adult cohorts and 300 for pediatric cohorts; and 3) minimum follow-up of three years. Participating studies were surveyed regarding design, data, and biosample resources.

Results

Twelve prospective cohort studies and two registries covering 21 countries were included. Participants age ranges from >2 to >70 years at inclusion, CKD severity ranges from stage 2 to stage 5. Patient data and biosamples (not available in the registry studies) are measured yearly or biennially. Many studies included multiple ethnicities; cohort size ranges from 400 to more than 13,000 participants. Studies’ areas of emphasis all include but are not limited to renal outcomes, such as progression to ESRD and death.

Conclusions

iNET-CKD (International Network of CKD cohort studies) was established, to promote collaborative research, foster exchange of expertise, and create opportunities for research training. Participating studies have many commonalities that will facilitate comparative research; however, we also observed substantial differences. The diversity we observed across studies within this network will be able to be leveraged to identify genetic, behavioral, and health services factors associated with the course of CKD. With an emerging infrastructure to facilitate interactions among the investigators of iNET-CKD and a broadly defined research agenda, we are confident that there will be great opportunity for productive collaborative investigations involving cohorts of individuals with CKD.
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Metadata
Title
International Network of Chronic Kidney Disease cohort studies (iNET-CKD): a global network of chronic kidney disease cohorts
Authors
Thomas Dienemann
Naohiko Fujii
Paula Orlandi
Lisa Nessel
Susan L. Furth
Wendy E. Hoy
Seiichi Matsuo
Gert Mayer
Shona Methven
Franz Schaefer
Elke S. Schaeffner
Laura Solá
Bénédicte Stengel
Christoph Wanner
Luxia Zhang
Adeera Levin
Kai-Uwe Eckardt
Harold I. Feldman
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Nephrology / Issue 1/2016
Electronic ISSN: 1471-2369
DOI
https://doi.org/10.1186/s12882-016-0335-2

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