U.S. and other international collaborative efforts to develop rare bleeding disorder registries will help increase the understanding of the natural history of these disorders and explore the molecular defects involved, potentially leading to safer and more effective fibrinogen replacement products. Registries also will assist clinicians in determining appropriate preventive management strategies.
Individuals researching the pathophysiology and/or molecular basis of CFD are listed below.
Rare Coagulation Disorders Resource Room, an extension of the RBDD Registry (eu.rbdd.org), was developed in collaboration with the Indiana Hemophilia & Thrombosis Center (www.innovativehematology.org).
The Resource Room serves as a platform to promote international collaboration to increase knowledge of these very rare disorders and to improve the care of affected individuals. The international RBDD mission, under the leadership of Dr. Peyvandi, will continue to be expanded over time.
The Resource Room thanks all contributing authors of the website articles that have made this valuable information available to the global community of both individuals affected with rare coagulation disorders and their healthcare providers.
