Dears,

The first aim of RBDD project is to determine the distribution of each single RBD in the world, and its available treatment. Therefore we invite you to fill a very simple questionnaire (attached form) which includes the main information in order to allow us to learn how many Centres and how many patients would like to participate and what type of intervention needs to be done in each region of the world.

Once you have sent the "joining form" you will be contacted and you will be asked to fill in a "tailored questionnaire" (file.pdf) in order to collect more detailed information regarding each enrolled patient including:

 

-	Phenotype and genotype analysis
-	Clinical manifestation
-	Type and nature of treatment (eg. on-demand/prophylaxis)
-	Treatment-related complications

In order to safeguard privacy, this second form have to be sent to us by ordinary or priority mail.

All data will be registered in the RBDD and statistically evaluated. Participants will be able to access results displayed by the reports on the web site. All reports are automatically updated. The generation of specific, on-request reports containing the desired information (if available), will be also possible.
To ensure privacy the sensitive data will be displayed only by operators. Here you can find documents regarding ethical and safety-related issues that we are currently using ("Ethical issues","Programmatic Document of Security" "Informed consent").

Many thanks for your collaboration. Please do not hesitate to contact us by phone or by email in case any further details are required.

Yours sincerely,
Flora Peyvandi MD, PhD

Angelo Bianchi Bonomi
Hemophilia and Thrombosis Centre
IRCSS Maggiore Hospital, Mangiagalli and Regina Elena Foundation
Luigi Villa Foundation
Department of Medicine and Medical Specialities, University of Milan
Milan, Italy