Welcome to the Australian Calciphylaxis Registry

Thank you for visiting the newly established Australian Calciphylaxis Registry website. Together with the German Calciphylaxis Registry (www.calciphylaxie.de), which is expanding to include other European countries, we see this as the start of international calciphylaxis registry collaboration.

In Germany, data on patients with calciphylaxis (calcific uraemic arteriolopathy) has been collected since 2006 via a similar online registry.

For rare conditions like calciphylaxis, international research networks offer a great opportunity for better understandings of pathophysiology and for advancing clinical management. Thank you for participating in this mission. Please look over the site and if you have or any questions, comments or suggestions for improvements, please do not hesitate to contact us via the website.

what is Calciphylaxis?

Calciphylaxis is a rare, potentially life-threatening syndrome characterized by progressive and painful skin ulcerations associated with medial calcification of medium-sized and small cutaneous arterial vessels. Calciphylaxis primarily affects patients on dialysis or after renal transplantation; however, exceptions have been reported in patients with normal renal function and in association with chronic-inflammatory disease, malignancy or primary hyperparathyroidism. Clinically, calciphylaxis is associated with a high mortality of up to 80%. Superinfection of necrotic skin lesions with subsequent sepsis significantly contributes to this outcome. Many patients also suffer from cardiovascular disease characterized by calcification of larger arterial vessels.

Useful links

  • Kidney Disease Improving Global Outcomes (KDIGO)
    KDIGO is the global organization developing and implementing evidence based clinical practice guidelines in kidney disease.  It is an independent volunteer-led self-managed charity incorporated in Belgium accountable to the public and the patients it serves.
  • National Kidney Foundation (NKF)
    The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.