April, 2007

In the framework of the Public Health Programme, the "European Project for the Establishment of a European Network of Rare Bleeding Disorders" was signed by PHEA (Public health Executive Agency) - acting under power delegated by the Commission of the European Communities, on march 29, 2007.

The main purpose of this project is to set up a European network of Treatment Centres, using the existing RBDD as the starting point, in order to increase the collection of clinical, genetic, and treatment data, and to develop a computer tool with the purpose of managing, editing and viewing all inserted data and making them readily available through database queries. Results and reports could be made available through the existing RBDD, which will be developed and implemented in an internet-accessible database (www.rbdd.eu), consisting of the following elements:

- a public section divulging results of the collection
- a protected access area for authorized Centres to insert new data, which will monitor, process, and manage stored data.

Standardization in collecting and analysing data will allow, firstly, European countries (through the collaboration of Centres participating already), and subsequently, all Treatment Centres worldwide, to share their research results, with the final goal of filling the gap between clinical data and clinical practice.
This new instrument - the EN-RBD -, will also constitute a valid source of information for clinical surveys of National and Supranational Health Organizations wishing to take healthy action in the field of RBDs.