The GlomCon is creating 5 focus areas. The first is a clinical exchange platform to bring together clinicians and pathologists from different locations in form of online case conferences. The remaining four are elements of a patient registry and have a scientific mission.
Members who have local institutional review board approval can enroll patients in any or all of the registry elements. Patients can choose to provide their medical records, including laboratory data, doctor’s notes, biopsy results and treatment history. Patients may also choose to donate a small amount of blood and urine. We give everyone with a known or suspected glomerular disease the opportunity to donate their DNA for research purpose. A contact registry will collect information from patients who are interested in participating in current or future clinical trials.
Web Based Clinical Case Discussions
We all know how challenging it can be to meet the daily demands of clinical work and at the same time participate in clinical conferences. Through the GlomCon, members will have online access to live clinical case conferences. In these conferences nephrologists from medical centers, training programs, and communities can connect with each other and with pathologists to discuss challenging cases. Often, the opinion of peers goes a long way when it comes to managing rare or complex glomerular disorders. CME credits will be provided to participating members.
Epidemiology & Observational Studies
A clinical data registry will serve as the backbone for enrollment and longitudinal follow up of patients with glomerular kidney disease. Consortium members can study disease incidence, prevalence and observational outcome studies across a cohort drawn from a network of nephrologists.
Discovery & Validation of Biomarkers
A scarcity of disease discriminating markers has made the diagnosis of the majority of glomerular disease challenging. Large scale collection of biospecimens and close collaboration among clinicians and scientists will aid the discovery of novel disease specific markers.
More than 50 genetic disorders have been identified as the primary causes of glomerular kidney disease. Their discovery has led to major insights in the structure and function of the glomerulus, and the patho-mechanism of glomerular disease. Genetic research can be both, of diagnostic and of therapeutic value.
Contact Registry & Catalyst for Clinical Trials
Even for the highly specialized referral centers, in many instances the limited number of patients has posed a major barrier to breakthrough discoveries in diagnosis and treatment of rare diseases. This lack of a “critical mass” is a major obstacle in implementing randomized and controlled clinical trials for rare disorders, including various forms of glomerular diseases.