Details of the EUHASS data collection and reporting system

 

 

Surveillance began on 1 October 2008.

 

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)
Thromboses
New cardiovascular events
New malignancy diagnoses
Deaths

 

Population data

 

At the end of each complete year of surveillance participating centres provide data on the number of patients registered with them and the clotting factor concentrates used to treat them. 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 (2010)