Rare Disease Group

CMV infection is a common complication after kidney transplantation and can cause significant morbidity. The condition is managed differently in different transplant centres in the UK.

The purpose of this group is to enrol a post-transplant CMV cohort in the Rare Renal Disease Registry (RaDaR) to collect and analyse data from kidney transplant recipients receiving care for CMV infection.

This will help:

  • Evaluate the incidence and clinical spectrum of CMV infection in UK renal transplant recipients
  • Understand the outcomes from different prophylaxis and management strategies for CMV infections, CMV disease and more complex CMV infection (refractory and resistant CMV)
  • Assess the utilisation of newer treatments, and estimate the incidence of drug-related adverse effects
  • Describe the long term outcomes after CMV infection
  • Support future research and the development of new guidelines in this field aiming to improve overall prevention and management of CMV viremia and CMV disease post solid organ transplantation

The multidisciplinary team, which includes kidney specialists, virologists, patients, and the RaDaR data management team, has outlined the data that needs to be collected to answer questions that will help understand current UK practice for managing CMV infection and CMV disease after kidney transplantation. This data will be the foundation of future research in this field. The RaDaR team have been working to facilitate the collection of this data on the website.

TBC

A patient representative from RaDaR supports us in the development of relevant research questions and materials for patient information.

We will report shortly after the finalization and establishment of the data collection protocol

RDG Lead(s)
  • Dr Sapna Shah, Consultant Nephrologist and RDG Lead, King's College London
Patient representative(s)
  • Mr Jonathan Baldwin, Patient Representative
Other members
  • Dr Durga Kanigicherla, Consultant Nephrologist, Manchester Royal Infirmary
  • Dr Mark Harber, Consultant Nephrologist, Royal Free Hospital London
  • Dr Sarah Browne, Consultant Nephrologist, University Hospital of Wales Cardiff
  • Dr Elham Asgari, Consultant Nephrologist, Guy’s Hospital London
  • Dr Jaisi Sinha, Consultant Microbiology and Virology, Wales Specialist Virology Centre University Hospital of Wales Cardiff
  • Dr Jan Dudley, Consultant Paediatric Nephrologist, Bristol Royal Hospital for Children

TBC