Sites for more information on F13 gene variants:
Gene Cards: Human Gene Data base from the Weizmann Institute of Science.
www.genecards.org/cgi-bin/carddisp.pl?gene=F13A1
NIH /NCBI Resources on Clinical Variants and Phenotypes associated with F13 genes
Sites for more information on FXIII registries and Clinical Resources for patients and Providers:
The PRO-RBDD Project is an international collaborating network that has developed a web database designed to prospectively collect clinical and laboratory data of patients with the most severe types of RBDs, fibrinogen deficiency and FXIII deficiency. The goal is to evaluate prevalence, bleeding frequency and management, as well as consumption of treatment products and related complications. Current studies are analyzing fibrinogen and factor XIII deficiencies.
For additional information, please contact info@rbdd.eu or read the PRO-RBDD flyer.
Additional resources are available on orphanet.org; Korean Mutation Database for Rare Diseases; Moroccan National Genetic Database; among others.
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.
