Royal Free Hospital

ILD6

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. Our objective is to describe the clinical course of end stage kidney failure due to rare renal diseases in the UK. Specifically, we will examine the age at which patients with specific conditions reach end stage kidney failure, if and when they are listed for transplantation, their waiting time, how many are transplanted, and patient and graft survival. Where sufficient event numbers permit, risk factors for death and graft loss will also be examined for each disease of interest. As well as providing information that will facilitate better informed, shared decision-making by patients and clinicians in the UK, this research may ultimately pave the way to collaboration with other European centres to look at variation in outcomes. Our findings may also inform future research and policy, for example addressing variation in access to transplantation.

26/01/2018