Rare Disease Group

The Calciphylaxis Rare Disease Group aims to:

  • Develop a comprehensive clinical database of Calciphylaxis patients via the RaDaR Rare Disease Registry
  • Collaborate with international registries, particularly the German registry
  • Form an expert panel of interested clinicians to review future clinical trials and research programmes
  • Develop diagnostic and treatment algorithms

The Calciphylaxis RDG are supporting the recruitment of patients into the UK Calciphylaxis Study.

The Calciphylaxis Rare Disease Group is part of the International Calciphylaxis Collaborative Network. The RDG also have close links with both the German Registry and the European Registry which is currently being developed.

Pending.

Calciphylaxis RDG Annual Report 2019 – 2020

RDG Lead(s)
  • Professor Smeeta Sinha, Consultant Nephrologist, Northern Care Alliance NHS Foundation Trust, RDG Lead
  • Dr Sharon Huish, Renal Dietitian, Royal Devon University Healthcare NHS Foundation Trust, RDG Co-Lead
Patient representative(s)
  • Joanna Biggs, Patient representative
Other members
  • Dr Jyoti Baharani, Consultant Physician and Nephrologist, Honorary Senior Lecturer, Birmingham Heartlands Hospital
  • Dr Jonathan Barratt, Consultant Nephrologist, University Hospitals of Leicester
  • Dr Ajay Dhaygude, Consultant Nephrologist, Lancashire Teaching Hospitals NHS Foundation Trust
  • Dr Matt Hall, Consultant Nephrologist, Nottingham Renal and Transplant Unit
  • Dr Emma McMullen, Consultant Dermatologist, Salford Royal NHS Foundation Trust
  • Dr Kanwaljit Sandu, Consultant Nephrologist, New Cross Hospital, Wolverhampton
  • Dr Asheesh Sharma, Consultant Nephrologist, Royal Liverpool University Hospital
  • Professor Rukshana Shroff, Consultant Paediatric Nephrologist, Great Ormond Street Hospital, London
  • Dr Martin Ford, King’s College Hospital NHS Foundation Trust

The UK Calciphylaxis Study is supported by an unrestricted educational grant from Amgen.