Research plays an important role in the care provided to patients and their families affected by bleeding and clotting disorders. Expanding knowledge around bleeding and clotting disorders leads to improved interventions and progress in improving the lives affected individuals.
The Oregon Regional Hemophilia Center at Oregon Health & Science University participates in the Universal Data Collection [UDC] through the Centers for Disease Control and Prevention. This project was established to provide comprehensive health management and prevention services. The UDC project promotes multi-disciplinary teams of healthcare specialists, state-of-the-art clinical research programs, outreach and education programs, and blood safety monitoring and surveillance. It additionally monitors the safety of treatment products in terms of infectious disease and inhibitors, UDC data are used to identify risk factors for complications and monitor the effectiveness of interventions designed to reduce these complications. This data will also serve as the foundation for a national database for clinical research.
We are also involved in multiple clinical studies testing new factor products for those affected by bleeding disorders and investigating some of the complications of living with a lifelong bleeding or clotting disorder. Studies are currently active for moderate and severe Hemophilia A and B patients and Hemophilia A or B patients with inhibitors.
The Oregon Regional Hemophilia Center is also on the forefront in basic and translational research working to define some of the known complications of bleeding and clotting disorders. We may ask patients to participate in studies when they come to clinic or they may be contacted by phone. Your involvement in studies helps ensure the lives of current and future patients will improve. Participation in studies is voluntary and the best interventions are always offered regardless of participation.