International Registry of Rare Bleeding Disorders (RBDs)

Last Updated on Friday, 05 February 2010 19:45

Thursday, 28 January 2010 17:44

Data and Information on Women's Health in the EU

This report provides an overview of women’s health issues across the EU and in EEA countries. It highlights gaps and special topics where research and more information are needed.

download.pdf

source: E.U Health and Consumers Directorate-General

Last Updated on Friday, 05 February 2010 19:48

Tuesday, 19 January 2010 09:22 administrator

3d workshop of the EN-RBD working group

Athens, Greece january 16th 2010

PROGRAMME

SESSION 1. State of the art of the EN-RBD project

CHAIRS : Flora Peyvandi and Helen Pergantou
Management of the EN- RBD project
Silvia Malosio, SMC – Servizi Media, Milan, Italy
EN- RBD project : results and expectations
Flora Peyvandi – University of Milan, Italy

SESSION 2. Update on National Database/Registry in Europe and proposals for future steps

CHAIRS : Ruth Gilmore and Majda Benedik Dolnicar
Greece: Helen Pergantou
Germany: Susan Halimeh
I reland: Ruth Gilmore
Turkey: Tiraje Celkan
UK: Paul Giangrande
Serbia: Danijela Mikovic
Slovenia: Majda Benedick Dolnicar

SESSION 3. Supports and collaborations

CHAIRS : Paul Giangrande
EU Public Health Programme
European Union Public Health Agency
Ethics issue in the UK and the EUHASS project
Mike Makris - Royal Hallamshire Hospital, Sheffield, UK

US registry and EN-RBD database: how to collaborate
Diane Aschman - President and CEO American Thrombosis and
Hemostasis Network

SESSION 4. ROUNDTABLE : The future of the EN-RBD database

CHAIRS : Flora Peyvandi
Which is the future for this project?

CONCLUSIONS
Flora Peyvandi

Last Updated on Tuesday, 19 January 2010 09:36

EN-RBD database 2.0

the new release of the European Network RBD database has been released on october 12 2009

the Bleeding Score section has been totally revised on the basis of a new study

The network objective now is to complete all the current data and enter more patients in order to obtain data analysis in time for our next workshop

on January 15th.

www.rbdd.eu

Last Updated on Wednesday, 21 October 2009 12:03

XXII Congress of The International Society on Thrombosis and Haemostasis

^{On July 11-16, 2009, the XXII Congress of the International Society of Thrombosis and Haemostasis (ISTH) was held in Boston, MA, USA.

Prof. Flora Peyvandi, from the University of Milan, presented the state of the art of the European Network of Rare Bleeding Disorders (EN-RBD) project during the}

^{Scientific and Standardization Committee (SSC) on Factor VIII and Factor IX}

^{Moreover Dr. Marzia Menegatti, from the University of Milan, presented the preliminary results obtained by the analysis of information on 608 patients entered in the EN-RBD database during the Abstract Symposium “Women and bleeding disorders: New perspectives”}

^Presentation

^{Prof Flora Peyvandi, on behalf of Dr Simona Maria Siboni, presented the results of the project on Central Nervous System (}^CNS^{) bleeding in patients affected by rare bleeding disorders (RBDs)}