Making Strides Toward Preventing Inhibitors in Bleeding Disorders
What are inhibitors?
Why are inhibitors an important area of study for CDC?
What is the system CDC uses to monitor inhibitors?
What was the purpose of the Second Inhibitor Summit?
- Share information about the Community Counts Registry for Bleeding Disorders Surveillance and the current state of national inhibitor monitoring,
- Identify steps to collect the most accurate and representative national data possible on the occurrence of inhibitors,
- Determine strategies to make sure that inhibitor testing methods are accurate, and
- Explore the need for a national, coordinated inhibitor science agenda.
Who attended the Summit?
- Federal partners: In addition to CDC, representatives from the National Institutes of Health (NIH), the Health Resources and Services Administration (HRSA) and the Food and Drug Administration (FDA) attended,
- Bleeding disorder community partners: National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), World Federation of Hemophilia, American Thrombosis and Hemostasis Network,
- Representatives of scientific organizations: NHF's Medical and Scientific Advisory Committee, Hemostasis and Thrombosis Research Society, International Society of Thrombosis and Haemostasis, and others, and
- Representatives of pharmaceutical companies with an interest: Bayer Healthcare Pharmaceuticals, Grifols, Novo Nordisk, Pfizer, and others.
- CDC is working with partners to develop educational materials for patients and care providers about the importance of regular testing for inhibitors.
- CDC is working with other Federal partners, including the NIH, HRSA, and FDA, to strengthen support for prevention efforts.
- CDC is working with 130 federally supported HTCs located throughout the United States to strengthen the monitoring system for people who receive care at HTCs and to learn more about what causes inhibitors.
What does CDC want people with hemophilia or VWD type 3 to know?
- Get tested for inhibitors once a year,
- Take advantage of the free inhibitor testing at federally funded HTCs through the CDC Community Counts Registry for Bleeding Disorders Surveillance program,
- Seek support and learn from other individuals and families who have been affected by inhibitors, and
- Consider participating in research studies that can result in new prevention programs that help reduce medical complications and lead to improved quality of life.
- Making Strides Toward Preventing Inhibitors in Bleeding Disorders
- World Hemophilia Day 2016
- Key Findings: Study of Hemophilia Care Outcomes over 50 Year Span Reveals Progress, Ongoing Health Challenges
- The safety of blood products is important for people with hemophilia
- Hemophilia and maintaining a healthy weight