National Hemophilia Registry (HTRS)

JJCCC is also one of only a select group of children’s hospitals designated a Hemophilia Treatment Centers (HTC) and qualifies to participate in the national hemophilia registry (HTRS), through the Hemophilia & Thrombosis Research Society (HTRS). This registry is used to gain a better understanding of the pathophysiology of hemophilia and other coagulation disorders.

The Hemophilia & Thrombosis Research Society (HTRS) has established a national patient registry. The national registry streamlines data collected from Hemophilia Treatment Centers (HTCs) and any other nationwide centers with qualifying patients from this population. After comparing and compiling data, this will help gain a better understanding nationally of:

• Pathophysiology of hemophilia and other coagulation disorders
• Current clinical management of patients with these disorders
• Association between particular patterns of practice and patient outcomes
• Safety and efficacy of alternative treatments
• To assist Novo Nordisk Pharmaceuticals, Inc. in their FDA-mandated effort to systematically assess the safety of NovoSeven® in large numbers of patients following FDA approval for marketing of NovoSeven®.