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The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation
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...
Autores principales: | , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6308822/ https://www.ncbi.nlm.nih.gov/pubmed/30596165 http://dx.doi.org/10.1016/j.ekir.2018.09.012 |
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author | Poyan Mehr, Ali Sadeghi-Najafabadi, Maryam Chau, Kristi Messmer, Joseph Pai, Rima Roy, Neil Friedman, David Pollak, Martin R. Schlondorff, Johannes Naljayan, Mihran Singh, Tripti Lecker, Stewart H. Rodby, Roger Germain, Michael Rennke, Helmut Stillman, Isaac E. |
author_facet | Poyan Mehr, Ali Sadeghi-Najafabadi, Maryam Chau, Kristi Messmer, Joseph Pai, Rima Roy, Neil Friedman, David Pollak, Martin R. Schlondorff, Johannes Naljayan, Mihran Singh, Tripti Lecker, Stewart H. Rodby, Roger Germain, Michael Rennke, Helmut Stillman, Isaac E. |
author_sort | Poyan Mehr, Ali |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-6308822 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | Elsevier |
record_format | MEDLINE/PubMed |
spelling | pubmed-63088222018-12-28 The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation Poyan Mehr, Ali Sadeghi-Najafabadi, Maryam Chau, Kristi Messmer, Joseph Pai, Rima Roy, Neil Friedman, David Pollak, Martin R. Schlondorff, Johannes Naljayan, Mihran Singh, Tripti Lecker, Stewart H. Rodby, Roger Germain, Michael Rennke, Helmut Stillman, Isaac E. Kidney Int Rep Review 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. Elsevier 2018-09-21 /pmc/articles/PMC6308822/ /pubmed/30596165 http://dx.doi.org/10.1016/j.ekir.2018.09.012 Text en © 2018 International Society of Nephrology. Published by Elsevier Inc. http://creativecommons.org/licenses/by-nc-nd/4.0/ This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). |
spellingShingle | Review Poyan Mehr, Ali Sadeghi-Najafabadi, Maryam Chau, Kristi Messmer, Joseph Pai, Rima Roy, Neil Friedman, David Pollak, Martin R. Schlondorff, Johannes Naljayan, Mihran Singh, Tripti Lecker, Stewart H. Rodby, Roger Germain, Michael Rennke, Helmut Stillman, Isaac E. The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation |
title | The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation |
title_full | The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation |
title_fullStr | The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation |
title_full_unstemmed | The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation |
title_short | The Glomerular Disease Study and Trial Consortium: A Grassroots Initiative to Foster Collaboration and Innovation |
title_sort | glomerular disease study and trial consortium: a grassroots initiative to foster collaboration and innovation |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6308822/ https://www.ncbi.nlm.nih.gov/pubmed/30596165 http://dx.doi.org/10.1016/j.ekir.2018.09.012 |
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