Abstract: INFO25
Kidney Research Network
Session Information
- Informational Posters
October 22, 2020 | Location: On-Demand
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- No subcategory defined
Authors
- Massengill, Susan F., Levine Children's Hospital, Charlotte, North Carolina, United States
- Kamil, Elaine S., Cedars-Sinai Medical Center, Los Angeles, California, United States
- Adler, Sharon G., Harbor-UCLA Medical Center Department of Internal Medicine, Torrance, California, United States
- Lindner, Clare Joan, University of Michigan, Ann Arbor, Michigan, United States
- Callaway, Andi J., Nephrotic Syndrome Foundation, Alamo, California, United States
- Elliott, Matthew, Metrolina Nephrology Associates, Charlotte, North Carolina, United States
- Lafayette, Richard A., Stanford University School of Medicine, Stanford, California, United States
- Pesenson, Anne, The Polyclinic, Seattle, Washington, United States
- Gipson, Patrick E., University of Michigan, Ann Arbor, Michigan, United States
- Eikstadt, Richard, University of Michigan, Ann Arbor, Michigan, United States
- Desmond, Hailey, University of Michigan, Ann Arbor, Michigan, United States
- Lavigne, Joseph Mark, University of Michigan, Ann Arbor, Michigan, United States
- Gipson, Debbie S., University of Michigan, Ann Arbor, Michigan, United States
Description
Kidney Research Network (KRN) is a collaborative organization designed to improve treatment options and outcomes for glomerular disease. KRN benefits from a Patient Advisory Board and includes a Clinical Trials Network, Patient Reported Outcomes (PRO) and Endpoints Consortium, Clinical Trials Consulting Team, Quality Improvement Core, Data Warehouse, and Data and Clinical Coordinating Center.
The KRN Trials Network includes 55 community and hospital-based nephrology practices with expertise in conducting clinical trials in nephrology. Seven sites participate in the KRN electronic health record (EHR) registry and as of June 2020 1,192 participants ages 2+ are enrolled with diagnoses of FSGS, Minimal Change Disease, Membranous Nephropathy, childhood nephrotic syndrome, IgAN, and others. By utilizing EHR data extraction, robust clinical data is captured while minimizing burden to sites. Registry data are used for quality improvement initiatives, clinical trial design and research.
The Data Warehouse includes data from EHR registry patients, PRO projects, and completed observational studies and trials. The Trials Consulting Team provides expertise and innovative approaches for trial design in rare diseases. The PRO and Endpoints Consortium develops and validates novel trial endpoints. The Patient Advisory Board, composed of voluntary patients and caregivers, assista with network governance, prioritization and communication strategy. The Coordinating Center manages analysis and operations of KRN research and supports the conduct of all aspects of clinical trials and studies.
Engaging with patients, academia, foundations and industry, KRN works to improve treatment options and outcomes using evidence-based approaches.
More information at kidneyresearchnetwork.org
KRN is affiliated with the Nephrotic Syndrome Foundation and sponsored by Atrium Health Foundation/Levine Children’s Hospital and University of Michigan.
Funding
- Funding from Atrium Health Foundation at Levine Children's Hospital, University of Michigan Affiliated with the Nephrotic Syndrome Foundation