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Nephrol Dial Transplant. 2016 Aug;31(8):1211-9. doi: 10.1093/ndt/gfw025. Epub 2016 Mar 22.

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

Author information

1
Department of Cardiology, University Hospital RWTH Aachen, Aachen, Germany.
2
Department of Internal Medicine, Division of Nephrology, University Hospitals Leuven, Leuven, Belgium.
3
Department of Nephrology, RWTH University of Aachen, Aachen, Germany.
4
Renal and Transplantation Department, Guy's and St Thomas' Hospitals, London, UK.
5
Division of Nephrology, Ambroise Paré University Hospital, APHP, University of Paris Ouest-Versailles-St-Quentin-en-Yvelines (UVSQ), Boulogne-Billancourt, Paris INSERM U1018, Research Centre in Epidemiology and Population Health (CESP) Team 5, Villejuif, France F-CRIN-INI-CRCT, Nancy, France.
6
Department of Cardiovascular, Respiratory, Nephrologic, Geriatric Sciences, Sapienza University of Rome, Rome, Italy.
7
Department of Biochemistry, Faculty of Medicine, Health and Life Science, Maastricht, The Netherlands.
8
Department of Renal Medicine, Manchester Academic Health Sciences Centre, Salford Royal NHS Foundation Trust, Salford, UK.
9
Nephrology and Renal Transplantation Department, Hospital Clinic, University of Barcelona, Barcelona, Spain.
10
Department of Nephrology and Dialysis, Clinique du Landy, Saint-Ouen, France Department of Renal Physiology, Necker Hospital, University of Paris Descartes, Paris, France.
11
Department of Nephrology, VU University Medical Center, Amsterdam, The Netherlands.
12
Department of Health Sciences, University of Milan, Renal Division, San Paolo Hospital, Milan, Italy.

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.

KEYWORDS:

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

PMID:
27005994
DOI:
10.1093/ndt/gfw025
[Indexed for MEDLINE]

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