logo

After the follow-up time of the study has been extended to 5 years, more information is being collected by the centres who actively take part into the study. The original 3-year study period was not sufficient to draw conclusions on the bleeding rate on different treatment regimens. As of today, follow-up data for 83 patients has been collected for up to three years over the total number of patients enrolled with a fibrinogen deficiency. For patients with FXIII deficiency follow-up data has been collected from 90% of the enrolled patients, confirming the findings published by the network partners.

Please find HERE a list of the updated publications.

The network encourages new partners to join and share their data prospectively. In addition to fibrinogen and factor XIII, also factor V, V+VIII and XI are studied using the same database. Partners will be able to obtain advice and genotype-phenotype analysis for their patients by the central lab and concur in determining the best practice in the treatment of these deficiencies.