Preparing for dialysis and kidney transplantation can be a challenging and uncertain time. Patients and parents of children want to know what to expect from dialysis and how it will affect their lives, how long they may have to wait for a kidney transplant, or how long a transplant might last. For patients with rare kidney diseases, it has been difficult to answer these important questions because we lack detailed information.

The UK Renal Registry collects anonymous data on all patients in the UK with kidney failure. This provides a unique opportunity to study rare kidney diseases in more depth. We intend to analyse the data collected over 18 years from around 9000 patients, to give us greater knowledge about the experience of patients with rare kidney diseases. The results of our work will be freely available to the public. We hope that our findings will help patients, their families and carers at an important time in their lives.

The results of this study would be of direct relevance to patients with the diseases studied. A greater awareness of the natural history of their condition would help them to plan for the future. Estimates of when they are likely to require renal replacement therapy (RRT), how long they may have to wait for a cadaveric renal transplant, and the likely lifespan of a transplant, will help patients and their families. Because many of the diseases studied in this project have an onset in infancy or childhood, many factors are involved in decisions over RRT; knowing what to expect in the journey ahead of them will help patients, their carers, and potential donors to make better informed, shared decisions.