Surveillance, Epidemiology, Research
Efforts have been made to advance knowledge and research for women with bleeding disorders; however, there is still more to learn to fully support these women, including establishing prevalence, assessing health care provider awareness, improving diagnostic testing techniques, and evaluating treatment and management options.
For 10 years, the Centers for Disease Control and Prevention (CDC) has supported a surveillance system, the Universal Data Collection (UDC) system, within a network of 135 Hemophilia Treatment Centers (HTCs) to monitor the safety of the blood supply among patients with blood disorders. Increasingly, women with blood disorders are seeking care at these HTCs, and currently, more than 4,000 participate in the UDC. However, data have not been collected on menstrual bleeding, reproductive outcomes, and postpartum bleeding. To gather this information, CDC has designed a data collection instrument for women. The goal of collecting such data is to better understand the effects of bleeding disorders on women’s reproductive health and the other symptoms associated with these disorders. Ultimately, these data will lead to improved care for women with bleeding disorders.
CDC is also conducting research to learn more about adverse maternal and infant health outcomes among women with blood disorders. Bleeding disorders have been associated with an increased risk for miscarriage, bleeding during pregnancy, and postpartum hemorrhage (PPH). CDC is currently supporting studies to determine the prevalence of blood disorders among women with PPH and to determine whether prenatal bleeding results in adverse outcomes for women with an underlying bleeding disorder. If women with underlying bleeding disorders remain undiagnosed and untreated, they may be at risk for adverse pregnancy and childbirth outcomes. Proper diagnosis and management of bleeding in these women could prevent potential complications during pregnancy and childbirth.
Informatics and Infrastructure
Core to CDC’s public health approach is integrating public health-related information systems. By collaborating with health care professionals, health plans, state health departments, and community-based organizations to track blood disorder characteristics in certain populations, knowledge and insight can be gained to develop prevention efforts and treatments.
Currently, CDC is helping to expand the scope of a network of specialized health care centers for hemophilia to include providing care for women with bleeding disorders. Health care professionals practicing in this network promote the management, treatment, and prevention of complications experienced by people with bleeding disorders.
Health Education and Health Literacy
Critical to advancing public health, CDC supports education and outreach activities for health promotion and wellness programs for people affected by bleeding disorders at both the community and national levels. One example of this activity is CDC’s funding of the National Hemophilia Foundation’s (NHF) public awareness campaign, Victory for Women, to help women recognize the symptoms of bleeding disorders. This awareness campaign focuses on educating women and their health care providers about the symptoms of bleeding disorders, especially VWD, and to encourage proper diagnosis and treatment.
Compounding low consumer awareness, some health care professionals may not be familiar with bleeding disorders affecting women, making a definitive diagnosis elusive. It is common for bleeding symptoms to be attributed to other causes or to simply go unexplained. To address this issue, CDC is working with the American College of Obstetricians and Gynecologists (ACOG) to evaluate gynecologists’ knowledge, attitudes, and practices related to the diagnosis of blood disorders. Based on the information collected, ACOG will enhance its guidance related to blood disorders and encourage gynecologists to consider these disorders in women who have menorrhagia and other bleeding symptoms.
Strengthening Laboratory Capacity
Building lab capacity is an important part of a public health approach to addressing blood disorders among women. Developing standard testing protocols and measurements to improve diagnostic accuracy, while at the same time remaining flexible and adaptable as we learn new things about blood disorders, is critical to new discoveries. CDC’s combination of scientific expertise, collaboration with national and local partners, and commitment to best practices uniquely positions the agency to set national testing standards.
The diagnostic criteria of most bleeding syndromes are very complex, and proper diagnosis requires a high-level laboratory. For instance, a diagnosis of VWD requires multiple tests, and those test results are subject to many subtleties in interpretation. Becau se tests for blood disorders in women can be complicated, it is vital to enhance laboratory research, systems, and technology to develop more intuitive and simplified methods for testing and improved diagnosis. CDC is positioned to develop more robust testing methods for the diagnosis of VWD and other blood disorders, such as platelet function disorders (PFDs). Previous CDC studies have found a high frequency of PFDs among women with menorrhagia, but little research has been done to determine whether these disorders exacerbate women’s bleeding symptoms. CDC is working to better define PFDs among a population of men and women without a blood disorder by using multiple, innovative testing methods.
CDC also seeks to enhance the laboratory services of the HTC network; there is great variability between the sites based on region, location of laboratories, staff, and procedures. A survey has been developed to characterize the laboratory services at the HTCs to determine the availability of coagulation testing and to improve access to quality diagnostic resources.
- Centers for Disease Control and Prevention
National Center on Birth Defects and Developmental Disabilities
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