The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.
Rare Bleeding Disorders Database (RBDD)
Angelo Bianchi Bonomi Hemophilia and Thrombosis Center
IRCCS Ca’ Granda, Maggiore Hospital Foundation
The Rare Bleeding Disorders Database (RBDD) is a registry whose mission is to set up a network of treatment centers dealing with rare bleeding disorders (RBDs) with the goal of developing a comprehensive database to collect laboratory phenotype and genotype data, as well as clinical and treatment information on each coagulation disorder through a specifically designed common data collection model (final results are reported on the web sites www.rbdd.eu and www.rbdd.org). RBDD’s goal is to understand which patients need to be registered as cases requiring more support for therapy and surveillance; reduce the void in assistance and consequently the number of patients in follow-up treatment; improve care, due to increased use of standardised therapeutic approaches with consequent improvement of the quality of life; optimize the contribution of public health services and the network of related agencies in the territory. Their final objective will be to write guidelines to assist the clinician in patient management by aligning best practice with the best available medical evidence.
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