Chronic kidney disease describes damaged kidneys. In kidney failure or ‘end-stage kidney disease’, kidneys don’t work as they are supposed to or have stopped working altogether. This is not survivable without treatments known as renal replacement therapy (RRT). RRT includes dialysis (blood cleaning) or kidney transplantation.
While RRT offers a chance of survival, it is not a cure and can fail. Reaching kidney failure early in life means children depend on RRT their whole lives. This can be burdensome and, in some cases, difficult to perform due to patient size or other medical problems. For some children, it may be in their best interests not to start RRT and to instead offer conservative care. Conservative care is a term used to describe treatment of a child’s kidney disease without RRT. It includes managing symptoms or complications of their kidney condition. It may also include end-of-life care.
This study aims to identify children who develop kidney failure and for whom an active decision has been made to manage their kidney disease conservatively (without dialysis or transplantation). We wish to understand how the decision for conservative management is made and important factors that are weighed up. Running this study through the British Paediatric Surveillance Unit (BPSU) will mean affected children, who may be under general or specialist paediatricians, can be recognised.
Outputs:
This study will help us understand the number of children diagnosed with kidney failure who are conservatively managed across the UK and Republic of Ireland. Currently, the UK Renal Registry (UKRR) collects and reports information on children with kidney failure who receive long-term RRT. Findings from this study, together with data from the UKRR, will help us to understand the true scale of kidney failure in UK children. This study will also help to understand how information on these children can be captured by the registry in the future.
We anticipate that findings from this study will also help to inform children and families about treatment options for kidney failure and to support professionals in providing equal access to high-quality care for affected children and families.
Privacy notice:
The UKRR (Renal Association) is the sponsor and data controller for this research study. The data protection officer at the UKRR can be contacted by email: [email protected].
The study team at the UKRR will use information from medical records for a medical research study. The lawful basis for collecting and using personal information in this study is article 6(1)(f) and article 9(2)(j) of the GDPR, which allows us to process personal data when it is for scientific research of legitimate interest. We will collect information about children with a new diagnosis of conservatively managed end-stage kidney disease from the doctors who are looking after them. Doctors will NOT provide identifying information like names and addresses, but they will provide personal information like sex, ethnic group and date of birth. The smallest amount of personal information will be used. We cannot withdraw or remove information from the study, but personal information will be deleted or de-personalised when the study finishes. The UKRR will securely store this information for 20 years.
If you want access to the information in your child’s NHS records, then you should contact your child’s NHS hospital/doctor.
If you want to find out more about how personal information is used in the study, please contact Lucy Plumb at the UKRR: [email protected]. For Scottish residents, information about the use of personal data is available in the privacy notices of your local NHS board, available through www.scot.nhs.uk/organisations.
If you wish to complain about the use of your personal information, then you should contact the Information Commissioner’s Office:
Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire SK9 5AF
Helpline number: 0303 123 1113
Email: [email protected]