The purpose of this project is to gather and share information about common health issues, medical complications, and causes of death that affect people with bleeding disorders cared for in the U.S. Hemophilia Treatment Centers (HTCs). Community Counts aims to continue the work of the Universal Data Collection System, which ended in 2011.
For complete information, please visit the Registry website.
Patients that were diagnosed with a bleeding disorder at birth and receive care at a hemophilia treatment center (HTC). Their condition must be one of the following disorders: Hemophilia A, (Classic Hemophilia/hereditary factor VIII (factor 8) deficiency). Hemophilia B, (Christmas disease/hereditary factor IX (factor 9) deficiency). von Willebrand disease. Please visit the website for other exceptions.
Patients not diagnosed at birth.
The Centers for Disease Control and Prevention (CDC).
Director, Hemostasis and Thrombosis Center; Director, Divisional Quality Improvement; Pediatric Hematologist-Oncologist
Showers Family Center for Childhood Cancer and Blood DisordersPediatric Stem Cell Transplant Program
