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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 13 years, the Centers for Disease Control and Prevention (CDC) supported a monitoring system, the Universal Data Collection (UDC) system, within a network of 135 Hemophilia Treatment Centers (HTCs) that monitored the safety of the blood supply among patients with blood disorders. During the project, the number of women with bleeding disorders seeking care at these HTCs increased steadily, and at the height of the project, more than 4,000 women participated in the UDC. To gather information on menstrual bleeding, reproductive outcomes, and postpartum bleeding, CDC designed a special data collection instrument for women. The goal of collecting such data was to better understand the effects of bleeding disorders on women’s reproductive health and the other symptoms associated with these disorders.

Data collection for UDC ended in 2011. A new monitoring initiative, Community Counts, builds on the work of the UDC and continues data collection in collaboration with the HTCs. In addition to monitoring activities, other research studies are being conducted to define and determine the causes and complications of hemophilia.

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.

CDC has helped to expand the scope of a network of specialized health care centers for hemophilia to include providing care for women 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 the National Hemophilia Foundation’s (NHF) public awareness campaign, Victory for Women, which helps women recognize the symptoms of bleeding disorders. CDC previously funded this awareness campaign, which focuses on educating women and their health care providers about the symptoms of bleeding disorders, especially VWD, and encourages 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 worked with the American College of Obstetricians and Gynecologists (ACOG) to evaluate gynecologists’ knowledge, attitudes, and practices related to the diagnosis of bleeding disorders.

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. Because 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 has worked 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.