Hemophilia & other Clotting Disorders

Scope of Care

The Hemophilia Center at Oregon Health & Science University (OHSU) is one of twelve regional grantees nationwide who receive grant funding from the federal Maternal and Child Health Bureau (MCHB) and the Centers for Disease Control (CDC). Funding received from MCHB directs Hemophilia Centers to provide comprehensive care for bleeding and clotting disorders, including diagnosis and treatment.  The MCHB supports inter-disciplinary care teams and promotes active consumer participation in all aspects of care provided by the Hemophilia Center.

As the regional core center, the Hemophilia Center collaborates with the following centers throughout the Northwest:

• The Hemophilia Program, at Puget Sound Blood Center in Seattle, Washington
• The Hematology Clinic, at Seattle Children’s Hospital in Seattle, Washington
• The Hemophilia Program, at Providence Sacred Heart Children's Hospital Pediatric Oncology Center in Spokane, Washington
• The Idaho Regional Hemophilia Center, at Mountain States Tumor Institute at St. Luke's Regional Medical Center in Boise, Idaho
• The Alaska Hemophilia Treatment Center (of the Alaska Hemophilia Association), at Providence Alaska Regional Medical Center in Anchorage, Alaska

The Hemophilia Center serves people with hemophilia A (factor VIII deficiency), hemophilia B (factor IX deficiency), von Willebrand's disease, and other hereditary bleeding and clotting disorders in Oregon and southwest Washington.

Services We Provide

The Hemophilia Center's location in Doernbecher Children’s Hospital at Oregon Health and Science University allows our patients access to the most recent advances in clinical care, research, education, and advocacy. The Hemophilia Center uses a comprehensive model for the delivery of effective care. When appropriate, team members visit the homes of patients and provide community education to school and local emergency medical personnel. Emphasis is on the education of patients and their families, other health care providers, educators, and employers, for successful management of bleeding disorders. The center thrives amid the diverse health care resources of OHSU, and is accessible as patients' needs require.

Service Providers

The staff of the Hemophilia Center provides a comprehensive, state-of-the-art, family-centered approach to all patients with bleeding and clotting disorders. In order to provide this level of service, our team has nationally recognized experts in all areas of care for the patient and family. Members of our team are lifelong learners and teachers. We are involved at the regional, national, and international level in organizations that advance clinical care, educational efforts, and advocacy for those affected by bleeding and clotting disorders.

How to make a Referral

Referrals are welcome from any source including parents, caseworkers, physicians, and other health/allied health care providers. Many families require a referral from their primary care provider in order for their insurance to cover the service. For more information, or to initiate a referral, please call 503-494-8716 or 800-452-3563 extension 48716.

Resources

Internet resources

• National Hemophilia Foundation: www.hemophilia.org
• World Federation of Hemophilia: www.wfh.org
• Hemophilia Foundation of Oregon: www.hfo.org
• International Society of Thrombosis and Hemostasis: www.med.unc.edu/isth
• American Society of Hematology: www.hematology.org
• Hemophilia Federation of America: www.hemophiliafed.org
• Hemophilia Innovation [CLOT magazine]: www.hemophiliainnovation.com
• GeneReviews: Hemophilia A http://www.geneclinics.org/profiles/hemo-a/
• GeneReviews: Hemophilia B http://www.geneclinics.org/profiles/hemo-b/
• National Blood Clot Alliance www.stoptheclot.org  

Books

• Basic Concepts of Hemophilia : A Self-Study and Planning Workbook for Families with a New Diagnosis of Hemophilia
• Hemophilia of Georgia  new parent book

Research

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 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.

The Hemophilia Center is 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 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.