European Network of Rare Bleeding Disorders: PRO-RBDD
Research type
Research Database
IRAS ID
167719
Contact name
Flora Peyvandi
Contact email
Research summary
European Network of Rare Bleeding Disorders: PRO-RBDD
REC name
East Midlands - Derby Research Ethics Committee
REC reference
15/EM/0038
Date of REC Opinion
26 Mar 2015
REC opinion
Further Information Favourable Opinion
Data collection arrangements
THE PRO-RBDD PROJECT is aimed at establishing a network of haemophilia centres which collect data on patients with the most severe types of rare bleeding disorders (RBDs), fibrinogen deficiency and FXIII deficiency, using a prospective observational
cohort design. It consists of interactive web-based pages designed to collect data on phenotype, genotype, bleeding manifestations, treatment and related complications for a time span of three years with 6 months interval.Research programme
Rare bleeding disorders (RBDs) represent 3 to 5% of all the inherited coagulation deficiencies, and include deficiencies of fibrinogen, factor (F) II, FV, FV+FVIII, FVII, FX, FXI, and FXIII with a frequency ranging from 1:500.000 to 1:1 million in the general population. Knowledge of the diagnostics and management of these patients is still a challenge due to the lack of experience and paucity of data related to the rarity of RBDs. The development of guidelines and treatment recommendations for these disorders are essential. For this reason, it is important to study epidemiology and clinical outcomes, collect longitudinal clinical data, and classify these disorders.
Research database title
European Network of Rare Bleeding Disorders: PRO-RBDD
Establishment organisation
Angelo Bianchi Bonomi, Haemophilia and Thrombosis Centre, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico
Establishment organisation address
Via Pace 9,
Milan
ITALY
20122