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

• Type: Another Publication in an International Scientific Journal
• Date: 2015

Authors

Brandenburg, V (Author) Other; Adragao, T (Author) Other; Dam, BV (Author) Other; Evenepoel, P (Author) Other; João Frazão (Author) FMUP; Ketteler, M (Author) Other; Mazzaferro, S (Author) Other; Torres, PU (Author) Other; Ramos, R (Author) Other; Torregrosa, JV (Author) Other; Cozzolino, M (Author) Other; Massy, Z (Author) Other; Covic, A (Author) Other; Vervloet, M (Author) Other; Goldsmith, D (Author) Other; Bover, J (Author) Other

Journal

Title: NDT Plus

Vol. 8

Pages: 567-571

ISSN: 1753-0784

Publisher: Oxford University Press

Indexing

ISI Web of Knowledge - 13 Citations

Scopus - 13 Citations

Other information

Authenticus ID: P-00K-2Y7

DOI: 10.1093/ckj/sfv056

Abstract (EN): 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.

Language: English

Type (Professor's evaluation): Scientific

No. of pages: 5