BK Virus Rare Disease Group

The BK Nephropathy (BKN) Rare Disease Group aims to:

  • collate contemporary information from UK kidney transplant recipients with BK Nephropathy
  • use this information to develop current and relevant information for patients
  • disseminate this information to the renal and transplant communities
  • establish a national consensus to identify recipients at high risk of developing BK Nephropathy
  • develop a recommendation for the optimal screening frequency for the presence of BK viraemia by PCR of peripheral blood
  • produce guidance on the modification of immunosuppressive regimens and use of additional agents to treat BK Nephropathy
  • develop a strategy for patient recruitment to observational and interventional clinical trials

The BK Nephropathy Rare Disease Group is newly formed. The first priority will be using the RaDaR rare disease registry to develop a national dataset from patients with BKN, to include:

  1. Risk factors suggested to be predictive of BKN
  • Demographics, Caucasian ethnicity, presence of diabetes mellitus, delayed graft function, induction treatment, cytomegalovirus infection, immunosuppressive regimen and donor and recipient HLA type).
  1. Diagnosis
  • Timing of onset of BK viraemia and nephropathy relative to transplantation
  • Immunosuppressive doses and drug levels at diagnosis
  • Renal function, including best eGFR posttransplant and eGFR at time of diagnosis
  • Viral load (in copies/ml) – at diagnosis
  1. Management
  • Changes to baseline immunosuppression and introduction of second line agents
  • Response of viraemia and eGFR to change in immunosuppression
  1. Outcome and complications
  • Renal function during modification of immunosuppression, following resolution of viraemia and long term follow up
  • Viral load (in copies/ml) post therapy change (4 weeks, 12 weeks, 6 months, 12 months and thereafter if viraemia persists)
  • Any episodes of rejection – T cell or antibody mediated
  • Graft loss (and cause of failure – whether due to BKN or rejection)
  • Development of ureteral stenosis or urogenital tract malignancy
  • Proteinuria – timing of onset and quantification
  1. Biopsy features
  • Histological characterisation
  • IFTA score on indicative biopsy

Pending

Pending

BK-Nephropathy RDG Annual-Report-2019-20

RDG Lead(s)

  • Dr Matthew Welberry Smith, Consultant Renal Transplant Physician, Leeds
Patient representative(s)
  • Mr Stuart Haines
Other members
  • Dr Ahmed Saleh, NHS Grampian
  • Professor Andrew Macdonald, School of Molecular and Cellular Biology, Leeds University
  • Professor Caroline Wroe, Consultant Nephrologist, Freeman Hospital, Newcastle
  • Dr Catherine Byrne, Transplant nephrologist, Nottingham University Hospitals
  • Dr Claire-Marie Mullender, St George's University Hospitals, London
  • Professor Colin Crump, Department of Pathology, University of Cambridge
  • Dr Joyce Popoola, Consultant and Senior Lecturer, St George’s University Hospital, London
  • Professor Neil Sheerin, The Medical School, Newcastle University
  • Dr Donall Forde, University Hospital of Wales
  • Dr Rhys Evans, UCL Centre for Kidney and Bladder Health and Royal Free Hospital, London, UK
  • Dr Sapna Shah, Consultant Nephrologist, King's College Hospital
  • Dr Fay Dickson, Leeds Teaching Hospitals
  • Dr Gayathri Rajakaruna, Consultant Nephrologist, East and North Hertfordshire NHS Trust
  • Dr Gemma Swinscoe, Faculty of Biological Sciences, Leeds University
  • Dr Geraint Dingley, Portsmouth Hospital
  • Professor Siân Griffin, Specialty Lead for Kidney and Urinary Tract Disorders, Cardiff and Vale UHB
  • Professor Stephen Marks, Great Ormond Street Hospital for Children NHS Foundation Trust and University College London Great Ormond Street Institute of Child Health, UK.
  • Dr Ian Humphreys, Cardiff University
  • Mr Jacob Browne, Leeds University
  • Dr Kelly Bicknell, Consultant Clinical Scientist -Virology, Portsmouth Hospital
  • Dr Mai Nguyen, Department of Renal Medicine, Royal Free Hospital, University College London
  • Dr Mohammed Al-Talib, Cardiff University
  • Dr Natalie Della Wyatt, Guy's & St Thomas', London
  • Mr Omar Masood, Consultant Surgeon, Leeds Teaching Hospitals
  • Professor Richard Stanton, School of Medicine, Cardiff University
  • Dr Simon Baker, Department of Biology & York Biomedical Research Institute, University of York
  • Dr Stephanie Chong, Department of Renal Medicine, Royal Free Hospital, University College London
  • Dr Stephen Adonai Leon Icaza, Crump Group, Cambridge University

The BK Nephropathy Rare Disease Group has not yet applied for any funding to support activities.

Dr Macdonald is in receipt of grant funding from Kidney Research UK and Kidney Research Yorkshire for the study of BK virus.