Dear colleagues,
The ISTH SSC on Fibrinogen and FXIII is launching an international cohort study on afibrinogenemia, focusing on rare but clinically significant complications, particularly thrombosis.
Afibrinogenemia is an ultra-rare disorder with highly variable clinical expression. While bleeding manifestations are well recognized, thrombotic events remain insufficiently characterized and poorly understood. This study aims to collect standardized clinical data to better define the frequency, triggers, management, and outcomes of thrombotic and severe bleeding complications.
The survey is concise and takes only a few minutes per patient. No protected health information should be included.
We warmly invite colleagues caring for patients with confirmed afibrinogenemia to contribute cases and support this collaborative international effort.
Thank you for your participation.
For additional information, please contact Alessandro.casini@hug.ch