Abstract: INFO13-TH
Kidney Research Network (KRN)
Session Information
- Informational Posters - I
November 07, 2019 | Location: Exhibit Hall, Walter E. Washington Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- No subcategory defined
Authors
- Adler, Sharon G., Harbor-UCLA Medical Center, Torrance, California, United States
- O'Shaughnessy, Michelle M., Stanford University, Palo Alto, California, United States
- Callaway, Andi J., The Nephrotic Syndrome Foundation, Alamo, California, United States
- Kamil, Elaine S., Cedars Sinai Medical Center, Los Angeles, California, United States
- Elliott, Matthew, Metrolina Nephrology Associates, Charlotte, North Carolina, United States
- Lafayette, Richard A., Stanford University, Palo Alto, California, United States
- Pesenson, Anne, The Polyclinic, Seattle, Washington, United States
- Gipson, Patrick E., University of Michigan, Ann Arbor, Michigan, United States
- Desmond, Hailey, University of Michigan, Ann Arbor, Michigan, United States
- Troost, Jonathan P., University of Michigan, Ann Arbor, Michigan, United States
- Gipson, Debbie S., University of Michigan, Ann Arbor, Michigan, United States
- Massengill, Susan F., Levine Children's Hospital, Charlotte, North Carolina, United States
Description
Kidney Research Network (KRN) is a collaborative organization composed of five cores designed to improve treatment options and outcomes for patients with glomerular disease. The cores benefit from a Patient Advisory Board and include a Data Warehouse, Clinical Trials Network, Clinical Trials Consulting Team, Patient Reported Outcomes (PRO) and Endpoints Consortium, and Data and Clinical Coordinating Center.
The KRN Trials Network includes 53 community and hospital-based nephrology practices with expertise in the conduct of clinical trials. Eight sites participate in the KRN electronic health record (EHR) registry and as of June 2019, 1191 adult and pediatric patients are enrolled with diagnoses including but not limited to Focal Segmental Glomerulosclerosis, Minimal Change Disease, Membranous Nephropathy, childhood onset nephrotic syndrome, and IgA Nephropathy. By utilizing EHR data extraction, robust and efficient clinical data is captured while minimizing the burden to site-based Network staff. Registry data are used for quality improvement initiatives, clinical trial design, research and Maintenance of Certification support.
The Data Warehouse includes EHR extracted data from registry patients, PRO development data and data from completed observational studies and clinical trials. The Clinical Trial Consulting Team offers support and innovative approaches for trial design in rare diseases. The PRO and Endpoints Consortium facilitates the development and validation of endpoints for clinical trials. The Patient Advisory Board is composed of voluntary patients and caregivers who assist with study prioritization, communication strategies and network governance. The Data and Clinical Coordinating Center manages the analysis and operations of Network research and can support the conduct of all aspects of clinical trials and studies.
By engaging with patients, academia, advocacy groups and industry, KRN endeavors to improve outcomes and treatment options using evidence-based support for clinical trial design and implementation. KRN is affiliated with the Nephrotic Syndrome Foundation and sponsored by the Atrium Health Foundation of Levine Children’s Hospital and the University of Michigan.
For additional information please visit: KidneyResearchNetwork.org
Funding
- Atrium Health Foundation; University of Michigan. Non-financial affiliation with the Nephrotic Syndrome Foundation