Supplier
CDC/NCBDDD and ATHN
Years Available
2015 to present
Periodicity
Annual
Mode of Collection
Surveillance data: active data collection.
Description
Conducted through a cooperative agreement, Community Counts Registry is a national surveillance project for inherited bleeding disorders in the United States led by the Centers for Disease Control and Prevention (CDC), along with its partners, the American Thrombosis and Hemostasis Network (ATHN) and the U.S. Hemophilia Treatment Center Network (USHTCN). The Registry gathers detailed information on patients who have been seen at federally-funded Hemophilia Treatment Centers (HTCs) since December 2013 and who have given authorization to share their data. HTCs are specialty care centers that receive funding from the Health Resources and Services Administration (HRSA) to provide comprehensive (integrated) and coordinated diagnosis, treatment, prevention, education, outreach and surveillance services to improve the health of people with genetic bleeding disorders. The Registry includes patients recruited from HTCs located throughout the United States, Puerto Rico and Guam.
Population Covered
Persons diagnosed with a bleeding disorder who receive care at federally funded HTCs. The condition must have been present at birth and must be one of the following bleeding disorders: Hemophilia A (Classic Hemophilia/hereditary factor VIII deficiency); Hemophilia B (Christmas disease/hereditary factor IX deficiency); Von Willebrand Disease (VWD); and certain rare clotting factor disorders and platelet disorders.