The UK Calciphylaxis Registry

Calcific uraemic arteriolopathy or calciphylaxis as it is frequently called is a syndrome of medial calcification of small arteries leading to painful ischaemia, usually of the skin, almost exclusively found in patients with chronic kidney disease (CKD). Mortality in reported case series is 60-80% with no effective treatment known.The pathophysiology remains poorly understood but recent advances in vascular biology have demonstrated that vascular calcification is a highly regulated process. If this process can therefore be comprehensively examined through phenotypic, genotypic and proteomic analysis, the opportunity to identify therapeutic targets within or without the current therapeutic armamentarium and design intervention studies in calciphylaxis may become feasible.  

Many of you have contributed to a recent UK calciphylaxis epidemiology project. In collaboration with Professor Markus Ketteler, we have now established an international calciphylaxis registry in the UK and Germany that will be able to accept serum, DNA & tissue in addition to demographic information & act as a valuable research repository for our renal communities.

UK ethical approval has been granted with no local Principal Investigator required. Therefore you are free to register your patient once informed consent has been obtained - see www.calciphylaxis.org.uk

A project manager, Vicky Jewell, is available to help with any queries and make the reporting process straightforward - contact victoria.jewell@srft.nhs.uk or phone +44 7516 774 365

The study goals are as follows:

  • To set-up a web-based Calciphylaxis Registry with 2 years data collection in the first instance.
  • To set up a tissue-bank comprising of blood, tissue, and DNA from patients with Calciphylaxis.
  • To reach a position where an expert body can advise on potential effective interventions or to formulate future clinical research involving candidate interventions.

Thank you for your support and interest. Please feel free to get in touch with any queries.

Janet Hegarty janet.hegarty@srft.nhs.uk

Donal O'Donoghue donal.o'donoghue@srft.nhs.uk

David Wheeler d.wheeler@medsch.ucl.ac.uk

www.calciphylaxis.org.uk