Lack of evidence does not justify neglect: how can we address unmet medical needs in calciphylaxis?

Vincent M. Brandenburg*, Pieter Evenepoel, Juergen Floege, David Goldsmith, Rafael Kramann, Ziad Massy, Sandro Mazzaferro, Leon J. Schurgers, Smeeta Sinha, Vicens Torregrosa, Pablo Urena-Torres, Marc Vervloet, Mario Cozzolino

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

33 Citations (Web of Science)

Abstract

Calcific uraemic arteriolopathy (CUA), or calciphylaxis, is a rare disease predominantly occurring in comorbidity with dialysis. Due to the very low frequency of CUA, prospective studies on its management are lacking and even anecdotal reports on treatment remain scarce. Therefore, calciphylaxis is still a challenging disease with dismal prognosis urgently requiring adequate strategies for diagnosis and treatment.In an attempt to fill some of the current gaps in evidence on various, highly debated and controversial aspects of dialysis-associated calciphylaxis, 13 international experts joined the 1st Consensus Conference on CUA, held in Leuven, Belgium on 21 September 2015. The conference was supported by the European Calciphylaxis Network (EuCalNet), which is a task force of the ERA-EDTA scientific working group on Chronic Kidney Disease-Mineral and Bone Disorders (CKD-MBD). After an intense discussion, a 9-point Likert scale questionnaire regarding 20 items on calciphylaxis was anonymously answered by each participant. These 20 items addressed unsolved issues in terms of diagnosis and management of calciphylaxis. On the one hand, the analysis of the expert opinions identified areas of general consensus, which might be a valuable aid for physicians treating such a disease with less experience in the field. On the other hand, some topics such as the pertinence of skin biopsy and administration of certain treatments revealed divergent opinions. The aim of the present summary report is to provide some guidance for clinicians who face patients with calciphylaxis in the current setting of absence of evidence-based medicine.? The Author 2016. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
Original languageEnglish
Pages (from-to)1211-1219
JournalNephrology Dialysis Transplantation
Volume31
Issue number8
DOIs
Publication statusPublished - Aug 2016

Keywords

  • calciphylaxis
  • cardiovascular
  • chronic renal failure
  • CKD-MBD
  • mineral metabolism

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