MyApnea.org, a new initiative that aims to create partnerships among patients with sleep apnea, clinicians and researchers, wants to hear from those who are suffering from sleep apnea or family members of those with sleep apnea. It is one of 18 patient-driven networks—in which patients play a large role in governance—that are building a national network to support new models for finding answers to questions patients are most interested in. Patients are able to nominate and vote on research questions that are posted on the site, and on a monthly basis, the top-voted items are raised in a research forum for discussion.
The initiative is funded by the Patient-Centered Outcomes Research Institute (PCORI) and is led by Susan Redline, MD, MPH, associate clinical director for BWH’s Sleep Disorders Service, and partners at the American Sleep Apnea Association, the largest sleep apnea advocacy group. The vision is to create a new model for future clinical research, in which patients help direct the work needed to understand which treatments are most effective and what further research is needed to improve the quality of life for patients with sleep apnea.
Millions of adults and children suffer from sleep apnea, which interrupts breathing due to a closing of throat tissues during sleep. Untreated, sleep apnea leads to health problems such excessive sleepiness, depression and high blood pressure. Sleep apnea has also been associated with an increased risk of heart attack, stroke, diabetes and shortened life expectancies. Treatments for sleep apnea include the use of continuous positive airway pressure (CPAP) machines, dental devices that realign the jaw, behavioral counseling and surgery.
MyApnea.org, a secure online community, is open to all patients who have been diagnosed with sleep apnea or are concerned they may have sleep apnea. Membership is free and open to family members, caregivers of patients with sleep apnea and those who are concerned their loved one may have sleep apnea. Members receive information on healthy sleep and lifestyle behaviors, sleep apnea news and updates.
The goal of the research initiative is enroll up to 50,000 participants. To sign up or learn more, visit MyApnea.org.