European Haemophilia Network (EUHANET)

EUHANET is a project aimed at establishing a network of haemophilia centres to work together on a number of related projects to improve the care of European citizens with inherited bleeding disorders.

PARTICIPANTS The project will be led from Sheffield in the UK by Dr Mike Makris. There are five associated partners: European Haemophilia Consortium (EHC), European Association for Haemophilia and Allied disorders (EAHAD, University Medical College Utrecht, Medical Data Solutions and Services Ltd (MDSAS) and Fondazione IRCCS Ca’ Granda in Milan.

EUHANET is open to all European Haemophilia centres, 84 centres from 26 countries have already committed to participating and were part of the original funding application.

FUNDING Sixty percent of the funding is provided by the European Commission via its Executive Agency for Health and Consumers (EAHC) and the rest will be raised from industry.

PROJECT DURATION The project started on 1st June 2012 and will continue until 31st May 2015.

IF YOU WISH TO TAKE PART OR WANT TO KNOW MORE
EUHANET is open to all European Haemophilia centres. Centres may take part in one or more of the components of the EUHANET project.

AREAS OF WORK The project has 4 main areas:

• Assessment and standardisation of quality of care of haemophilia centres:
  EUHANET will develop a system for certification of the delivery of haemophilia care in Europe. During the first year of the project criteria defining 2 levels of haemophilia care will be defined through extensive consultation. Treatment centres will then be invited to apply for certification and their level of service will be assessed according to which criteria they satisfy.
  
  
• Haemophilia Central website:
  By the end of the project this will include information on guidelines, clinical information on all inherited bleeding disorders, location of haemophilia centres, details of clotting factor concentrates, database of active clinical trials, a news service and a service for affected individuals to ask questions.
  
  
• European Haemophilia Safety Surveillance (EUHASS) adverse event reporting:
  EUHASS is a pharmacovigilance programme to monitor the safety of treatments for people with haemophilia and other inherited bleeding disorders in Europe. It started in 2008 and currently has 80 centres reporting from 26 European countries caring for almost 30,000 people with bleeding disorders. It will be expanded to include reporting of adverse events in acquired haemophilia, acquired von Willebrand’s disease and severe inherited platelet disorders. Data on the management of thrombotic events will also be collected.
  
  
• The Rare Bleeding Disorders Database (RBDD):
  The RBDD was set up by the European Network of Rare Bleeding Disorders (EN-RBD) and has retrospective information on the non haemophilia rare bleeding disorders. The database will be extended to allow the collection of prospective data on the bleeding and natural history of afibrinogenemia and factor XIII deficiency. Central specialised coagulation factor and genetic testing will be offered and an external quality assessment scheme will be established.