To develop a network of European Centres dealing with patients affected by RBDs, in order to collect information on clinical, laboratory and treatment data regarding each single coagulation deficiency.
We planned to use the existing RBDD as the platform for the first network of the European Treatment Centres for RBDs.
Actually, the RBDD has already obtained the adhesion of 16 European states (11 belonging to the EU) plus 68 Centres scattered all over the world

(see the "join" section of the RBDD web-site, www.rbdd.org).

In following stages, the number can be increased by including more Centres from all over Europe and subsequently form the rest of the world.

To test the operability of an European network merging the information coming from each collaborating partner through the development of a common model for data collection, query and report.

To make the network accessible to all Centres in Europe and spread worldwide once it will be established and correctly operating.

To standardize laboratory methods for phenotype and genotype analysis according to the standard procedures ruled by International Society on Thrombosis and Haemostasis (ISTH).

To improve health information and knowledge. Due to the rarity of RBDs, single Centres may see few patients, and therefore individual clinicians have limited experience of their management. The purpose of a guideline is to assist the clinician in managing patients based on the best current medical evidence.

To make accessible the results derived from the EN-RBD project through this web-site (www.rbdd.eu).
This site will represent a means by which clinicians, scientists and researchers could exchange experience and information, as well as a means to bring science to the public's attention and increase public awareness.

To verify the possibility to merge already existing National Registries in a unique, homogeneous database, a powerful tool to exchange the best medical practice and to develop epidemiological data.

To explore the possibility that distribution of treatments for RBDs patients could 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.