Calciphylaxis – RDG

  • Aims of the 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
  • Current Activities

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

  • International Links

    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.

  • Patient Support Groups

    Pending.

  • Reports
  • Group 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
    • Mrs Andrea Hancock, Patient Representative
    • Professor Alastair Hutchison, Consultant Nephrologist, Central Manchester NHS Foundation Trust
    • Dr Emma McMullen, Consultant Dermatologist, Salford Royal NHS Foundation Trust
    • Dr Kanwaljit Sandu, Consultant Nephrologist, New Cross Hospital, Wolverhampton
    • Dr Smeeta Sinha, Consultant Nephrologist, Salford Royal NHS Foundation Trust, RDG Lead
    • Dr Asheesh Sharma, Consultant Nephrologist, Royal Liverpool University Hospital
    • Dr Rukshana Shroff, Consultant Paediatric Nephrologist, Great Ormond Street Hospital, London
  • Disclosure of Conflicts of Interest

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

Calciphylaxis RDG Version 2 Updated August 2016
Written by the Calciphylaxis Rare Disease Group