Women's Sleep Health and MyApnea.Org: Opportunities to 'Power' Future Research and 'Personalize' Medicine

03/18/2015 05:31 pm ET | Updated May 18, 2015
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By: Emily Kontos, Sc.D. and Susan Redline, M.D., M.P.H., Brigham and Women's Hospital, Boston, MA for the Society for Women's Health Interdisciplinary Network on Sleep

Over the past decade much progress has been made in identifying sex and gender differences in many health outcomes including sleep disturbances and disorders. Previous articles have reviewed issues such as the increased risk of obstructive sleep apnea (OSA) in women as they approach menopause and differences in rates of seasonal affective disorder among women starting as early as puberty. Research also indicates that women are at 40 percent increased risk for developing insomnia compared with men [1]; they have twice the risk for Restless Leg Syndrome (RLS) [2]; and many sleep issues carry additional burden for women such as increased risk of depression and heart disease [3].

Nonetheless, there are gaps in our understanding of the roles of sex and gender on sleep and sleep disturbances. Sleep disorders often present with distinct sets of symptoms and patterns of co-morbidities in males and females. Emerging data also indicate that there are gender differences in responsiveness to treatments for sleep disorders. 2013 was the first time that the Food and Drug Administration (FDA) issued a sex-specific guideline for any drug when it reduced the recommended dose of zolpidem (Ambien) for treatment of insomnia in women based on research that showed women metabolize the drug half as fast as men [4]. There is a clear need to further examine the role of gender on treatment of other sleep and health disorders.

To truly make an impact on women's health, scientific research and discovery must push beyond descriptive studies to uncover the fundamental causes of these differences. The Society for Women's Health Research has issued a call for an increase in clinical trials that examine sleep health among women at various hormonal stages in life and with an array of comorbid conditions [5]. Key questions include: How is sleep influenced by biology and genetics as well as women's social roles? Across the lifespan, how do changes in hormones and social roles influence sleep, and do these factors interact? How can this understanding be used to tailor specific treatments to individuals most likely to benefit and least likely to suffer harm?

We propose OSA as an exemplar for a disease requiring greater "personalization," beginning with a consideration of gender differences. OSA causes breathing disturbances during sleep, which can cause surges in stress hormones and blood pressure, increasing risk for diabetes, heart disease, stroke, and depression [6]. Until recently, OSA was considered to predominantly affect men. It is increasingly apparent, however, that gender differences in how symptoms are reported, and OSA screening is performed have contributed to a significant under-diagnosis of sleep apnea in women [7,8]. Unrecognition and misdiagnosis may further exacerbate an array of health problems.

There are new opportunities for women to take an active role in advancing the science of sleep and ultimately improving their health and well-being. Thanks to the recent scientific and technological revolution, there are exciting opportunities for precision/personalized medicine to improve health care. President Obama outlined a ground breaking initiative appropriating $215 million to accelerate such biomedical discoveries that would provide new tools and knowledge to identify which treatments will work best for which patients based on such factors such as genetics, ancestry, and sex.

There are also important efforts to improve comparative effectiveness research by focusing on patient-centered outcomes. This type of research asks: Of available treatment alternatives, which are most effective, and for which patients? The Patient-Centered Outcomes Research Institute has established PCORnet, the National Patient-Centered Clinical Research Network, which engages patients, clinicians, and health systems in partnerships to develop platforms to efficiently conduct this fundamental research. Within PCORnet there a number of Patient-Powered Research Networks focused on specific health conditions such as sleep apnea that combine the knowledge and insights of patients and researchers to help guide research that identifies effective and "personalized" treatments. Network members nominate and vote on research questions and can participate in forums to discuss how such research should be conducted. Through these research communities members can identify what questions related to gender and sleep are most important and can co-develop proposals with clinicians and scientists to address these needs.

It is now easier than ever for women to play an active role not only their health care but in the research that is driving the decisions behind their health care. This is ever so important in the area of sleep health where the persisting gaps in knowledge are a significant determent to women's health. MyApnea.Org already has enrolled over 2,300 members nationally. More than half the members of women, indicating the interest of women in a condition that inappropriately has been considered "male" problem. If you have been diagnosed with sleep apnea or know someone who is, encourage them to join the patient-powered research network MyApnea.Org. Your data has the power to move the dial in women's health.


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