The Renal Data Institute
The Renal Data Institute is a unique resource of the Kidney & Urology Foundation of America. It was established to gather clinical information that would help doctors and the public learn more about certain kidney and urologic disorders in the U.S.
Projects are initiated by physicians and reviewed by the Kidney & Urology Foundation’s scientific committee.
How it works:
The Institute gathers clinical information from over months to years from participating academic medical institutions and enters the information in computers at the Kidney & Urology Foundation of America. The pooled data from this multi-centered, computer-driven approach can be statistically analyzed and results formulated in ways designed to answer specific questions raised by the participating physicians.
When a study is completed, hundreds of cases will have been analyzed, thereby giving added weight to the conclusions.
The most successful component of our Renal Data Institute is our Pediatric Registry:
The pediatric registry is a first-of-its kind collaborative research program designed to determine the prevalence of various types of pediatric kidney disease – even the rarest forms of the disease. Spearheaded by Frederick Kaskel, MD, PhD, Chair of the Kidney & Urology Foundation’s Council of Pediatric Nephrology and Urology (CPNU), and Professor & Vice-Chairman of Pediatrics/
Director of Pediatric Nephrology at the Children's Hospital at Montefiore, the registry brings together 10 competing hospital systems – which share their research/findings on kidney disease in children.
At this time, approximately 9,000 names are included in the Pediatric Registry.
An example of outcomes from the Pediatric Registry:
The Pediatric Registry laid the groundwork for a National Institutes of Health (NIH) study on Focal Segmental GlomeruloSclerosis (FSGS) in children, a disease whereby children with nephrotic syndrome develop lesions causing glomerular damage (damage to the kidney’s filtering “screens”) and eventually irreversible renal impairment.
For more information about the Renal Data Institute/ the Pediatric Registry, please contact us at 212.629.9770.