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Kidney Int Rep. 2018 Sep 21;4(1):20-29. doi: 10.1016/j.ekir.2018.09.012. eCollection 2019 Jan.

The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation.

Author information

1
Division of Nephrology and Department of Medicine, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, Massachusetts, USA.
2
Section of Nephrology and Hypertension and Department of Medicine, The Louisiana State University Health Sciences Center, New Orleans, Louisiana, USA.
3
Division of Nephrology and Department of Medicine, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin, USA.
4
Department of Internal Medicine, Division of Nephrology, Rush Medical College, Illinois, USA.
5
Baystate Medical Center, University of Massachusetts Medical School, Springfield, Massachusetts, USA.
6
Department of Pathology, Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts, USA.
7
Department of Pathology, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, Massachusetts, USA.

Abstract

Glomerular kidney disorders account for a significant proportion of chronic kidney disease and end-stage renal disease worldwide. Nevertheless, major obstacles make breakthrough progress in diagnosis and cure an ongoing challenge. Here we report the creation of a "grassroots" initiative that aims to provide new opportunities for nephrologists, pathologists, basic and clinical scientists, patients, and industry partners to collaborate in the field of glomerular kidney disease. Members of the medical community, including trainees, nephrologists, and nephropathologists, can participate in the open-access, Web-based, multidisciplinary clinical video case conferences, which provide "peer-to-peer" exchange of clinical and pathological expertise combined with a formal didactic curriculum. Participants can also join other aspects of the broader initiative. These include the participation in a multisite research study to facilitate enrollment of patients into a longitudinal clinical data and biorepository for glomerular kidney disorders. Items included in this prospective registry include the following: an ontology-based patient medical history, which is regularly updated; interval collection and storage of blood and urine samples; DNA collection; and a contact registry for patients who wish to participate in clinical trials. Participating sites and external scientists can leverage access to the database to pursue genetic, biomarker, epidemiological, and observational clinical effectiveness studies. Patients can independently sign up for a supplementary contact registry to participate in clinical trials if eligible. The broad spectrum of activities within this initiative will foster closer collaboration among trainees, practicing nephrologists, pathologists, and researchers, and may help to overcome some of the barriers to progress in the field of glomerular kidney disease.

KEYWORDS:

disease registry; glomerular kidney disease; nephrology education; observational clinical studies

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