Australian Calciphylaxis Registry

Information

Calciphylaxis is a rare, potentially life-threatening syndrome characterised 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 characterised by calcification of larger arterial vessels.

Objectives of the proposed Australian Calciphylaxis Registry:

  • To develop a large database, together with relevant laboratory samples from patients with calciphylaxis, to provide a resource for research into its causes.
  • To develop an evidence base for management and for evaluating the safety and efficacy of therapies to improve treatment and overall patient care.
  • To provide advice and physician feedback when required, including information on management.
  • To securely combine deidentified Australian registry data with data from European and other international registries.

 

Registry LocationAustralia (no exclusion of non-Australian participants)
Registry ParticipationVoluntary
Registry Contact

For further information please contact: A/Professor Grahame Elder Department of Renal Medicine, Westmead Hospital

T: (02) 98456962

E: info@acr.com.au

Adding New Patients to Registry

Institutions involved:
The Registry is located at Westmead Hospital, Sydney, but all departments of nephology in Australian hospitals will be invited to participate.

Please see the website for more information

calciphylaxis.org.au

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