Kids Kidney Research

Kidney disease in childhood is very rare, making it difficult to study. Disease registers are essential to get clinical information together for analysis. There is no structure for this at present in the U.K. To develop it, the renal community needs a short term project to develop and test the information technology that registries need to use. To get started we will develop a registry for two rare diseases that affect children and young people. They are mesangio-capillary glomerulonephritis (MCGN) and focal glomerulosclerosis (FSGS).  Both are serious and lead to end-stage kidney failure. The effectiveness of the registry will be demonstrated by resolving a simple question about the cause (pathogenesis) of each disorder. This project will lead to a sustainable long term strategy for research into rare kidney diseases, mostly in children but also adults, and is a unique opportunity to set in place a powerful infrastructure to effectively scaled clinical research into childhood kidney disease.