According to the 2006 USRDS Annual Data Report, the incidence in the United States of end-stage renal disease (ESRD) in young people ages 0 - 19 years is 14 per million people. The primary etiologies vary with age, but structural anomalies predominate. Data in the most recent report from the Chronic Renal Insufficiency arm of the North American Pediatric Renal Transplant Cooperative Study (NAPRTCS) indicate that about two-thirds of the patients on the registry had some type of structural anomaly.
Numerous metabolic derangements occur in chronic kidney disease (CKD), and they have a significant impact on the overall well-being of affected children. Of the negative effects of pediatric renal disease, growth impairment is the best documented and studied, but very little systematic information is available about the magnitude of other developmental problems. In fact, large-scale prospective studies of pediatric chronic kidney disease have not been done.
The Prospective Study of Chronic Kidney Diseases in Children was established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), in collaboration with the National Institute of Neurological Disorders and Stroke (NINDS), and the National Institute of Child Health and Human Development (NICHD), to determine the following in children with CKD:
- Risk factors for decline in renal function
- Incidence of, and risk factors for, impaired neurocognitive development and function
- Prevalence of risk factors for cardiovascular disease
- Long-term effects of growth failure and its treatment
The clinical coordinating centers for the study are Johns Hopkins University (Susan Furth, PI) and Children's Mercy Hospital, Kansas City (Bradley Warady, PI). The data coordinating center is Johns Hopkins University (Alvaro Munoz, PI). The study has been renewed for a second phase and is slated to be completed in 2013. The information obtained from this study will establish natural history and outcome measures for intervention/prevention trials.
NIDDK/KUH Program Officer: Marva M. Moxey-Mims, M.D., (301) 594-7717.