Details of the CHESS data collection and reporting system


CHESS is structured as a prospective web-based adverse reporting system with the minimum possible impact on the routine of hemophilia centres. It allows participating centre to record events on a single page form immediately after the event happens or at the end of a three-month period. Only information routinely recorded for patient management is reported; no extra examination or data collection is required.


Patients included in the surveillance


Haemophilia A
Haemophilia B
von Willebrand’s disease:       type 1 severe (<15% VWF:RiCo), type 2 , type 3
Factor I deficiency:                Afibrinogenemia (<10mg/dl), Hypofibrinogenemia (10-50 mg/dl), Dysfibrinogenemia (50-150 mg/dl)
Factor II deficiency
Factor V deficiency
Factor VII deficiency
Factor X deficiency
Factor XI deficiency
Factor XIII deficiency
Alpha 2 antiplasmin deficiency
Combined Factor V+VIII deficiency
Combined Factor II, VII, IX, X deficiency


Patients excluded from surveillance


Patients with acquired clotting factor deficiencies.


Events to be reported during surveillance


Allergic or other acute event
Transfusion transmitted infections
Inhibitors (antibodies against the coagulation factor)
New cardiovascular events
New malignancy diagnoses


Population data


At the end of each complete year of surveillance, population data (i.e. data on the number of patients registered with participating centres and the clotting factor concentrates used to treat them) will be imported from the CHR/CHARMS after approval and review by the Hemophilia Clinic Director. Centres may report usage of unlicensed clinical trial products (no product name is reported) as well as licensed named products.




IT Development and Support by MDSAS (2013)