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

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.

Figure 1

Overview of the Glomerular Disease Study and Trial Consortium. Six main platforms work synergistically to create new opportunities in field of glomerular kidney disease (inner circles), and one possible example on how the various members and groups may connect through a “Spoke and hub” model (outer circles). Each stakeholder can connect to lead and support any aspect of the larger initiative. GN, glomerulonephritis.

Figure 2

Glomerular Disease Clinical Case conferences. Twice monthly web-based video conferences with tumor board−like case review and peer-to-peer exchange among nephrologists and nephropathologists. GlomCon, Glomerular Disease Study and Trial Consortium; HIPAA, Health Insurance Portability and Accountability Act of 1996, is United States legislation that provides data privacy and security provisions for safeguarding medical information, https://www.hhs.gov/hipaa/.

Figure 3

Relative search interest. Numbers represent worldwide search interest relative to the highest point on the chart for the given time. A value of 100 is the peak popularity for the term. In this case, the term “breast cancer” reached peak popularity in October 2014. (Every October “Breast Cancer Awareness Month” is celebrated, leading to annual spikes in search interest.) A value of 50 means that the term is one-half as popular. Likewise, a score of 0 means the term was less than 1% as popular as the peak. Data from Google Trends (https://www.google.com/trends).

Figure 4

Patient subcategorization. Qualitative schematic representation of various patient subpopulations with glomerular kidney disease.