Format

Send to

Choose Destination
Clin Kidney J. 2015 Oct;8(5):567-71. doi: 10.1093/ckj/sfv056. Epub 2015 Jul 6.

Blueprint for a European calciphylaxis registry initiative: the European Calciphylaxis Network (EuCalNet).

Author information

1
Department of Cardiology , University Hospital RWTH Aachen , Aachen , Germany; on behalf of the ERA-EDTA scientific working group 'CKD-MBD'
2
Diaverum Unidade do Estoril , Lisboa , Portugal.
3
Department of Internal Medicine, Medisch Centrum Alkmaar, Alkmaar, The Netherlands.
4
Department of Internal Medicine, Division of Nephrology , University Hospitals Leuven , Leuven , Belgium.
5
Medical School and Nephrology Research and Development Unit , Hospital de S. João, University of Porto , Porto , Portugal.
6
Department of Nephrology , Klinikum Coburg , Coburg , Germany.
7
Department of Cardiovascular, Respiratory, Nephrologic, Geriatric Sciences , Sapienza University of Rome , Rome , Italy.
8
Department of Nephrology and Dialysis, Clinique du Landy, Department of Renal Physiology, Necker Hospital, University of Paris Descartes, Paris , France ; Department of Renal Physiology, Necker Hospital , University of Paris V. René Descartes , Paris , France.
9
Departamento de Dirección Médica , Fresenius Medical Care España , Madrid , Spain.
10
Nephrology and Renal Transplantation Department, Hospital Clinic , University of Barcelona , Barcelona , Spain.
11
Renal Division , DMCO, University of Milan, San Paolo Hospital , Milan , Italy.

Abstract

Calcific uraemic arteriolopathy (CUA) is a rare disease and continues to be a clinical challenge. The typical course of CUA is characterized by painful skin discolouration and induration evolving to necrotic ulcerations. Medial calcification of cutaneous arterioles and extensive extracellular matrix remodelling are the hallmarks of CUA. The epidemiology and risk factors associated with this disease are still not fully understood. Moreover, CUA treatment strategies vary significantly among centres and expert recommendations are heterogeneous. Registries may provide important insights and information to increase our knowledge about epidemiology and clinical aspects of CUA and may help to optimize its therapeutic management. In 2006, we established an internet-based registry in Germany (www.calciphylaxie.de) to allow online notification of patients with established or suspected CUA. The registry includes a comprehensive database with questions covering >70 parameters and items regarding patient-related and laboratory data, clinical background and presentation as well as therapeutic strategies. The next phase will be to allow international patient registration via www.calciphylaxis.net as part of the multinational EuCalNet (European Calciphylaxis Network) initiative, which is supported by the ERA-EDTA scientific working group 'CKD-MBD'. Based on the valuable experience with the previous German CUA registry, EuCalNet will be a useful tool to collect data on the rare disease CUA and may become a basis for prospective controlled trials in the near future.

KEYWORDS:

calcific uraemic arteriolopathy; calcification; chronic kidney disease; dialysis; vascular disease

Supplemental Content

Full text links

Icon for Silverchair Information Systems Icon for PubMed Central
Loading ...
Support Center