project

 

 

The main goals of the EN-RBD project are:

  

The aim of the project was to set up a European network among Treatment Centers dealing with rare bleeding disorders (RBDs), to increase the collection of clinical, genetic and treatment data and to develop a common computer tool with the purpose of managing, editing and viewing all entered data and make them readily available through database queries. Once established and correctly operating, the network can be accessible to all Centres in Europe and spread worldwide.
Specific aims were:
- To produce guidelines for diagnosis and treatment
- To standardize laboratory methods for phenotype and genotype analysis according to the standard procedures ruled by International Society on Thrombosis and Haemostasis (ISTH).
- To stimulate the interest of pharmaceutical industries in the development or improvement of not yet available products (as FV and FX concentrates) and of regulatory agencies (FDA, EMEA) in the planning of new clinical trials.
- To improve health information and knowledge through this web-site made available to clinicians, researchers, and patients who could exchange experience and information, as well as a weapon to bring information on RBDs to the public attention, and hence to increase awareness.