Research on von Willebrand Disease

While von Willebrand disease (VWD) affects both men and women, this condition poses unique problems for women because of the impact the disorder can have on their reproductive health and quality of life. Current data estimate that as many as 1% of women in the United States may have VWD and many are unaware of their condition.^1,2

Women with VWD can experience complications, such as heavy menstrual bleeding (called menorrhagia) and bleeding after pregnancy that can affect their overall health. CDC collaborates with public and private organizations in conducting research to better understand bleeding disorders such as VWD affecting women and girls.

Current research suggests that many cases of heavy menstrual bleeding might be due to an underlying bleeding disorder, the most common of which is von Willebrand disease (VWD). A 2002 CDC study of obstetricians and gynecologists in Georgia found that only 4% of the doctors who responded would have considered VWD as a possible cause of heavy menstrual bleeding. Those doctors also thought that only about 1% of women with heavy menstrual bleeding might have VWD.³ However, studies in the United States and Europe have shown VWD to be much more common; from 17% to 37% of women with heavy menstrual bleeding have been found to have VWD.⁴ Women with bleeding disorders might be at an increased risk for other gynecological complications, such as ovarian cysts, endometriosis, fibroids, and miscarriage; however, more study is needed.

CDC conducts research to:

• Learn more about the number of people with bleeding disorders and risk factors for complications.
• Develop and implement interventions that will help prevent complications of bleeding disorders, such as bleeding after pregnancy.
• Create and deliver health promotion messages to encourage early diagnosis and treatment to prevent unnecessary complications and to help women make informed decisions about their own health care.
• Discover blood tests through laboratory analysis that can help identify people who might be at risk for complications from bleeding disorders.

Harris Interactive Survey on Young Women and Bleeding Disorders

A lack of information about bleeding disorders is a serious public health concern. To address this, in 2010 the CDC and the National Hemophilia Foundation (NHF) engaged Harris Interactive to conduct a national web-based survey to assess the knowledge, attitudes, and health behaviors about the menstrual experiences of young women 18 through 25 years of age. The objective of this survey was to learn more about young women’s knowledge and views about menstrual experiences within personal, self-care, work, home, and social environments.The findings show that one in five women was unsure of how to define a bleeding disorder. Fewer than half of the young women surveyed recognized that periods lasting more than seven days or a diagnosis of anemia should be cause for concern to discuss with a doctor. Young women lack sufficient knowledge about the symptoms of bleeding disorders and are in need of more information. These survey findings will help CDC and NHF determine effective and innovative ways to reach and inform young women about bleeding disorders and encourage them to talk with their doctor about heavy menstrual periods. Discussions with healthcare providers may lead to an early diagnosis of a bleeding disorder such as von Willebrand disease, a disorder in which the blood does not clot properly.

Women’s Treatment and Management Study

Menorrhagia (heavy menstrual bleeding) is a common clinical problem among women. The underlying cause is not identified in 50% of cases; therefore, women might have undiagnosed VWD or another blood disorder. The majority of women with uncontrolled menorrhagia undergo a hysterectomy or other surgical procedures to relieve excessive bleeding. In this study, two noninvasive therapies―desmospressin and tranexamic acid―were compared. Both therapies were found to (1) reduce menstrual blood loss, and (2) improve the quality of life for women who had menorrhagia and abnormal laboratory findings. However, tranexamic acid was shown to have a greater effect.

Learn more about this study »

Postpartum Bleeding Study

Postpartum hemorrhage (PPH), which is severe bleeding by the mother after delivery, is a significant public health problem and the leading cause of death among women during childbirth. Women with VWD are more likely to experience PPH and are 10 times more likely to die from childbirth complications than women without VWD.⁵ Through proper diagnosis and management of a bleeding disorder during pregnancy, potentially fatal complications can be prevented. CDC is conducting research to learn more about improving the health outcomes of women with bleeding disorders. The goals of this research include:

• Determining what percentage of women who had PPH have a bleeding disorder.
• Identifying symptoms, risk factors, and other complications associated with bleeding disorders.
• Assessing the adverse pregnancy outcomes associated with a bleeding disorder.

Study on Bleeding During Early Pregnancy

Few reports exist that describe pregnancy and childbirth complications among women with bleeding disorders. Some reports have suggested that women with VWD or other bleeding disorders are more likely to bleed during pregnancy and experience miscarriage and PPH. To learn more, CDC plans to study women who experience bleeding during early pregnancy to determine if an underlying bleeding disorder exists. If so, treatment to stop the bleeding can be given to prevent these poor pregnancy outcomes.

Screening Tool Evaluation Study

Referring women who have unexplained menorrhagia (heavy menstrual bleeding) for testing to determine if they have a bleeding disorder is challenging from the perspectives of public health and cost. Justifying a recommendation for testing all women who have menorrhagia is difficult because most women tested will not have a bleeding disorder. From a financial perspective, these tests are expensive so this approach would be costly. To help address this issue, CDC funded research to develop an eight-question screening tool to help identify women who would be most likely to benefit from the testing.⁶

References

1. Rodeghiero F, Castaman G, Dini E. Epidemiological investigation of the prevalence of von Willebrand’s disease. Blood. 1987 Feb;69(2):454-9.
2. Werner EJ, Broxson EH, Tucker EL, et al. Prevalence of von Willebrand disease in children: a multiethnic study. J Pediatr 1993 Dec; 123(6): 893-8.
3. Dilley A, Drews C, Lally C, et al. A survey of gynecologists concerning menorrhagia: perceptions of bleeding disorders as a possible cause. Journal of Women’s Health and Gender-Based Medicine 2002; 11(1): 39-44.
4. Kadir RA, Economides DL, Sabin C, et al. Frequency of inherited bleeding disorders in women with menorrhagia. Lancet 1998; 351: 485-9.
5. James AH, Jamison MG. Bleeding events and other complications during pregnancy and childbirth in women with von Willebrand disease. J Thromb Haemost 2007;5:1195–9.
6. Philipp CS, Faiz A, Heit JA, et al. Evaluation of a screening tool for bleeding disorders in a US multisite cohort of women with menorrhagia. Am J Obstet Gynecol 2011;204:209.e1-7.