Background
Haemophilia and related disorders are inherited conditions that result in patients experiencing excessive bleeding. Treatment is by replacement of the missing clotting factor with infused factor concentrate, use of other blood components, desmopressin, non-factor therapies or gene therapy.
In the past, infections transmitted by contaminated clotting factor concentrates resulted in many patients with haemophilia becoming infected with HIV and hepatitis C viruses. Although current concentrates are safer in terms of infections, continued close surveillance is required. Other adverse events are the development of antibodies to factor concentrates (inhibitors), allergic events, thrombotic events, and other events.
Because haemophilia and other inherited bleeding disorders are rare and therefore adverse events related to their treatment are also rare, it is necessary to follow a large number of patients in order to identify and define the risk of developing these complications after treatment with the different products. This is what EUHASS has been designed to do by creating a prospective adverse event reporting system for Europe.
Aims
- To monitor the safety of treatments for people with haemophilia and other inherited bleeding disorders in Europe.
- To inform clinicians, regulators and other interested parties of the treatment patterns and adverse events reported for these patients in Europe.
- To set up a publicly available database of all the Haemophilia centres in Europe with details of how they can be accessed by patients, and information on relevant patient, doctor, nurse and physiotherapist organisations in each country.
- To set up a publicly available directory containing information and publications lists for all the clotting factor products used in Europe to treat haemophilia and other inherited bleeding disorders.
Tel: 0032 484 360 121
email: noa.kabera@eahad.org
Tel: +44 (0)161 850 5075
Email: support@mdsas.com
