title: Blueprint for a European calciphylaxis registry initiative: the European Calciphylaxis Network (EuCalNet).
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.
authors.affiliation: Department of Cardiology , University Hospital RWTH Aachen , Aachen , Germany; on behalf of the ERA-EDTA scientific working group 'CKD-MBD'
authors.forename: Vincent
authors.initials: V
authors.lastname: Brandenburg
authors.affiliation: Diaverum Unidade do Estoril , Lisboa , Portugal.
authors.forename: Teresa
authors.initials: T
authors.lastname: Adragao
authors.affiliation: Department of Internal Medicine, Medisch Centrum Alkmaar, Alkmaar, The Netherlands.
authors.forename: Bastiaan
authors.initials: B
authors.lastname: van Dam
authors.affiliation: Department of Internal Medicine, Division of Nephrology , University Hospitals Leuven , Leuven , Belgium.
authors.forename: Pieter
authors.initials: P
authors.lastname: Evenepoel
authors.affiliation: Medical School and Nephrology Research and Development Unit , Hospital de S. João, University of Porto , Porto , Portugal.
authors.forename: João M
authors.initials: JM
authors.lastname: Frazão
authors.affiliation: Department of Nephrology , Klinikum Coburg , Coburg , Germany.
authors.forename: Markus
authors.initials: M
authors.lastname: Ketteler
authors.affiliation: Department of Cardiovascular, Respiratory, Nephrologic, Geriatric Sciences , Sapienza University of Rome , Rome , Italy.
authors.forename: Sandro
authors.initials: S
authors.lastname: Mazzaferro
authors.affiliation: 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.
authors.forename: Pablo
authors.initials: P
authors.lastname: Urena Torres
authors.affiliation: Departamento de Dirección Médica , Fresenius Medical Care España , Madrid , Spain.
authors.forename: Rosa
authors.initials: R
authors.lastname: Ramos
authors.affiliation: Nephrology and Renal Transplantation Department, Hospital Clinic , University of Barcelona , Barcelona , Spain.
authors.forename: Jose-Vicente
authors.initials: JV
authors.lastname: Torregrosa
authors.affiliation: Renal Division , DMCO, University of Milan, San Paolo Hospital , Milan , Italy.
authors.forename: Mario
authors.initials: M
authors.lastname: Cozzolino
keywords: calcific uraemic arteriolopathy; calcification; chronic kidney disease; dialysis; vascular disease