Dr Lucy Plumb
UK Renal Registry
Bristol BS10 5NB
About the study
Chronic kidney disease describes damaged kidneys. In ‘end-stage kidney disease’ (ESKD), 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 ESKD 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 with ESKD who receive conservative care. We wish to understand how the decision not to start RRT is made and important factors that are weighed up. Running this study through the BPSU will mean affected children, who may be under general or specialist paediatricians, can be recognised. It is hoped that findings from this study will help to inform children and families about treatment options for ESKD. It will also help professionals to provide equal access to high-quality care for affected children and families.
Any incident children aged less than 16 years who develops kidney failure, also known as 'end-stage kidney disease' (ESKD), during the study period for whom an active decision has been made in the child’s best interests not to pursue long-term RRT* and to instead manage the child’s kidney disease conservatively (this decision may have been made before or after reaching ESKD).
Please report any cases of children and young people <16 years of age who meets surveillance case definition seen in the last month in the UK or the Republic of Ireland.
Please report cases even if you think they may have been reported elsewhere.
September 2020 to September 2022 (25 months of surveillance).
Follow-up until September 2023 (12 month follow-up).
The study is funded through a grant from Kidney Research UK.
This study has been approved by South West - Central Bristol Research Ethics Committee (reference: 19/SW/0197); HRA Confidentiality Advisory Group (reference: 19/CAG/0190); and Public Benefit and Privacy Panel for Health and Social Care (reference: 1920-0101).
The UK Renal Registry (Renal Association) is the sponsor and data controller for this research study. The Data Protection Officer at the UK Renal Registry can be contacted by email: firstname.lastname@example.org.
The study team at the UK Renal Registry 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 UK Renal Registry 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 UK Renal Registry: email@example.com. 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
Cheshire SK9 5AF
Helpline number: 0303 123 1113
- *. RRT refers to invasive treatments used to substitute the role of the kidneys and includes: Haemodialysis; haemodiafiltration; peritoneal dialysis; renal transplantation; continuous forms of RRT used on Paediatric Intensive Care Units such as continuous venovenous haemodialysis (CVVHD), continuous veno-venous haemodiafiltration (CVVHDF) and slow continuous ultrafiltration (SCUF).