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2015 ; 8
(5
): 567-71
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English Wikipedia
Blueprint for a European calciphylaxis registry initiative: the European
Calciphylaxis Network (EuCalNet)
#MMPMID26413282
Brandenburg V
; Adragao T
; van Dam B
; Evenepoel P
; Frazćo JM
; Ketteler M
; Mazzaferro S
; Urena Torres P
; Ramos R
; Torregrosa JV
; Cozzolino M
Clin Kidney J
2015[Oct]; 8
(5
): 567-71
PMID26413282
show ga
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.