MyApnea.Org relies on partnerships and inclusion in its mission to improve sleep apnea treatment and research.
MyApnea.Org is a new initiative that aims to create partnerships among patients with sleep apnea, clinicians, and researchers. MyApnea.Org is one of 18 patient-powered networks that together are building a national network to support new models for finding answers to questions patients are most interested in. The initiative is funded by the Patient-Centered Outcomes Research Institute (PCORI) and is led by Susan Redline, MD, MPH, Associate Clinical Director, Sleep Disorders Service at Brigham and Women’s Hospital, 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, where 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 as excessive sleepiness, depression, and high blood pressure. Sleep apnea also has 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 have a concern that they may have sleep apnea. Membership is free and open to family members or caregivers of patients with sleep apnea or to those who are concerned their loved one may have sleep apnea.
As a member of MyApnea.Org, you’ll receive information on healthy sleep and healthy lifestyle behaviors, along with sleep apnea news and updates. The information you’ll be provided, including that shared by other patients, should not substitute for professional medical advice, diagnosis, or treatment that your doctor or nurse may give you. Always ask your doctor if you have any questions about your health.
The goal of the research initiative is to enroll up to 50,000 participants. Please consider signing up – or share with your family and friends.- Jamie R.