Clinical and epidemiological research

Ann Rheum Dis 2012;71:1177–1182. doi:10.1136/annrheumdis-2011-200549 1177 ABSTRACT Objective To report on the demographic data from the fi rst 18 months of enrollment to an international registry on autoinfl ammatory diseases in the context of the Eurofever project. Methods A web-based registry collecting baseline and clinical information on autoinfl ammatory diseases and related conditions is available in the member area of the PRINTO web-site. Anonymised data were collected with standardised forms. Results 1880 (M:F=916:964) individuals from 67 centers in 31 countries have been entered in the EUROFEVER registry. Most of the patients (1388; 74%), reside in western Europe, 294 (16%) in the eastern and southern Mediterranean region (Turkey, Israel, North Africa), 106 (6%) in eastern Europe, 54 in Asia, 27 in South America and 11 in Australia. In total 1049 patients with a clinical diagnosis of a monogenic autoinfl ammatory diseases have been enrolled; genetic analysis was performed in 993 patients (95%): 703 patients have genetically confi rmed disease and 197 patients are heterozygous carriers of mutations in genes that are mutated in patients with recessively inherited autoinfl ammatory diseases. The median diagnosis delay was 7.3 years (range 0.3–76), with a clear reduction in patients born after the identifi cation of the fi rst gene associated with autoinfl ammatory diseases in 1997. Conclusions A shared online registry for patients with autoinfl ammatory diseases is available and enrollment is ongoing. Currently, there are data available for analysis on clinical presentation, disease course, and response to treatment, and to perform large scale comparative studies between different conditions.