The UK Calciphylaxis Study

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 and the study has been adopted onto the CRN national portfolio. Please contact Lesley Haydock first for advice on how to recruit patients. You will then  need to contact your local R+D Dept but should then be free to register your patient once informed consent has been obtained - see www.calciphylaxis.org.uk

A senior research nurse is available to help with any queries and make the reporting process straightforward - contact lesley.haydock@srft.nhs.uk or phone +44 161 206 1309

The study aims to determine the following:

  1. What is the natural history of the disease?           
  2. What risk factors are associated with development and progression of calciphylaxis?
  3. Which treatments currently in clinical practice confer a favourable outcome?
  4. What are the underlying disease processes?

These aims will be achieved by collecting information on medications, clinical parameters, local laboratory tests, measuring specific proteins and molecules in blood and tissue as well as studying patient’s DNA profiles.

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

Smeeta Sinha  smeeta.sinha@srft.nhs.uk, Lesley Haydock lesley.haydock@srft.nhs.uk and see www.calciphylaxis.org.uk (click on HealthCare professionals; it isn't that obvious)