Potential of the Community Counts registry to characterize rare bleeding disorders.
Sweta GuptaSuchitra AcharyaChristopher RobersonAlice LailJ Michael SoucieAmy ShapiroPublished in: Haemophilia : the official journal of the World Federation of Hemophilia (2019)
There is a clear need to identify individuals with RBDs who could benefit from the comprehensive care provided in the USHTCN. In addition, increased enrolment of people with all RBDs in the Registry is needed to improve knowledge of treatment outcomes of patients with RBDs in the United States.