TY - JOUR
T1 - Blueprint for a European calciphylaxis registry initiative
T2 - The European calciphylaxis Network (EuCalNet)
AU - CKD-MBDWG ERA-EDTA
AU - Brandenburg, Vincent
AU - Adragao, Teresa
AU - Dam, Bastiaan Van
AU - Evenepoel, Pieter
AU - Frazão, João M.
AU - Ketteler, Markus
AU - Mazzaferro, Sandro
AU - Torres, Pablo Urena
AU - Ramos, Rosa
AU - Torregrosa, Jose Vicente
AU - Cozzolino, Mario
AU - Massy, Ziad
AU - Covic, Adrian
AU - Vervloet, Marc
AU - Goldsmith, David
AU - Bover, Jordi
PY - 2015/1/1
Y1 - 2015/1/1
N2 - 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 aswell 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-EDTAscientific 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.
AB - 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 aswell 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-EDTAscientific 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.
KW - Calcific uraemic arteriolopathy
KW - Calcification
KW - Chronic kidney disease
KW - Dialysis
KW - Vascular disease
UR - http://www.scopus.com/inward/record.url?scp=84954047825&partnerID=8YFLogxK
U2 - https://doi.org/10.1093/ckj/sfv056
DO - https://doi.org/10.1093/ckj/sfv056
M3 - Review article
SN - 2048-8505
VL - 8
SP - 567
EP - 571
JO - Clinical Kidney Journal
JF - Clinical Kidney Journal
IS - 5
ER -