International Kidney Disorder Registry (K-REG)
Research type
Research Study
Full title
Kidney Disorders International Registry (K-REG)
IRAS ID
276076
Contact name
Andreas Kousios
Contact email
Sponsor organisation
University of Pennsylvania
Duration of Study in the UK
4 years, 11 months, 25 days
Research summary
Research Summary
The Kidney Disorders International Registry (K-REG) is a prospective and retrospective data registry. The purpose of the registry is to provide a mechanism to store clinical data about patients with kidney disorders to support the conduct of future research about kidney disorders.
Kidney disease is very common in the United States and worldwide, and the cost managing kidney disease, particularly patients with end-stage kidney disease that require dialysis, represents a significant proportion of health care spending in the United States and worldwide. Comprehensive databases are invaluable in making possible research to identify critical patterns and behaviours in the heterogeneous landscape of kidney disorders. Pooling of clinical data across multiple sites will allow us to set up a foundation for understanding the behaviour of kidney disorders that will ultimately assist in predicting the course of treatment for individual patients, and provide the basis for developing new targeted therapies. The clinical information will be used to track trends in therapy, events, and outcomes in people diagnosed with kidney disorders to further our knowledge and understanding of the diseases. Ultimately, the investigators hope that the information from the registry will contribute to our generalizable knowledge of kidney disorders and improve the care, quality of life, and survival of people with kidney disorders.
The K-REG Registry is an international, multi-centre initiative that will track clinical data including therapy and clinical outcomes over time. The Registry represents collaboration among nephrologists across sites to promote optimal disease management and improve kidney disorder outcomes. The University of Pennsylvania will help operationalize the database for the K-REG Registry. The aim is to include patient data for this study from academic centres in the United States, Canada, and Europe.Summary of Results
The University of Pennsylvania renal research team, as the sponsors, was no longer able to support the PGNMID project from a regulatory perspective and no CI was identified at University of Pennsylvania to take over the KREG project. Thus the study has ended prematurely and no final results are available.
REC name
North of Scotland Research Ethics Committee 2
REC reference
20/NS/0104
Date of REC Opinion
24 May 2021
REC opinion
Further Information Favourable Opinion