The KIDCARE study

• Research type

  Research Study

• Full title

  Kidney Care and outcomes for children with Congenital Anomalies using Registry data.

• IRAS ID

  364511

• Contact name

  Lucy Plumb

• Contact email

  lucy.plumb@bristol.ac.uk

• Sponsor organisation

  University of Bristol Research Governance Team, Division of Research, Enterprise and Innovation

• Duration of Study in the UK

  4 years, 11 months, 30 days

• Research summary

  Congenital anomalies are conditions affecting the body’s structure or function which develop in pregnancy. They are common. Children with congenital anomalies are at risk of kidney disease, but our knowledge is limited to severe cases. This problem has not been looked at for all children with congenital anomalies.

  Long-term or ‘chronic’ kidney disease (CKD) can lead to kidney failure, which needs kidney replacement therapies (KRT) such as dialysis or a kidney transplant for survival. In children, kidney disease affects growth and development, quality of life and is associated with reduced life years compared to healthy children. Because of this, early detection of kidney disease is a public health priority. If kidney disease is detected early, children can be carefully monitored by specialist teams. Treatments can be started to delay kidney disease progression. If needed, families have time to prepare for a kidney transplant, which is the best and most cost-effective treatment for kidney failure.

  For children with congenital anomalies, we do not know what their lifetime risk of kidney disease is. We do not know if they are at risk of short- or long-term kidney disease. These children are known from birth to have a medical issue and could benefit from early monitoring to prevent kidney disease in later life.
  This study addresses this research gap. It will:

  1. Identify which children with congenital anomalies develop kidney disease and who is at risk of developing kidney failure
  2. Determine if there are differences in access to kidney care and outcomes
  3. Calculate the health costs and benefits of kidney disease monitoring in childhood

  This will be achieved using a new linked dataset comprising two nationally representative registries, the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) and the UK Renal Registry, in addition to administrative health datasets (Hospital Episode Statistics, Office for National Statistics).

• REC name

  South West - Cornwall & Plymouth Research Ethics Committee

• REC reference

  26/SW/0082

• Date of REC Opinion

  25 Jun 2026

• REC opinion

  Favourable Opinion