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Press Release

Patient-Powered Research Community, MyApnea.Org, Aims to Redefine Sleep Apnea Research Outcomes and Treatment

June 24, 2015

A new web-based community portal, www.MyApnea.Org, is recruiting patients, caregivers and those at risk for sleep apnea to join a growing community of patients and researchers to better understand sleep apnea through information sharing, support and research. The network brings together patients, researchers and health care providers to work together in the same virtual community to improve diagnosis and treatment, with the ultimate goal of improving the quality of life for those who suffer from sleep apnea.

"There has never before been this level of collaboration among patients, researchers and clinicians aimed at solving the challenges of sleep apnea," said Susan Redline, MD, MPH, principle investigator of the Sleep Apnea Patient Centered Outcomes Network (SAPCON), of which MyApnea.Org is the public face.  "The network is open to anyone diagnosed with sleep apnea (whether or not they are currently being treated) or at-risk of the condition and caregivers.  Children with apnea are often overlooked, so we are particularly eager to have parents or caregivers join on behalf of their children," she added. Read the complete press release here.

SAPCON is coordinated by the Division of Sleep and Circadian Disorders at Brigham and Women's Hospital in collaboration with patient volunteers from across the country and sleep apnea patient advocacy and research organizations.  Steering Committee members include Dr. Judith Owens, the Director for Sleep Medicine at Boston Children's Hospital, Dr. Vishesh Kapur, Director of Sleep Medicine for the Division of Pulmonary and Critical Care Medicine at University of Washington in Seattle, WA and Nancy H. Rothstein, MBA, The Sleep AmbassadorĀ® and patient. SAPCON is part of PCORnet, the National Patient-Centered Clinical Research Network, a historic national research venture that invites people across the nation to share health information and to guide the course of comparative effectiveness research for a many serious and chronic diseases. Funded by the Patient-Centered Outcomes Research Institute (PCORI), MyApnea.Org is one of 29 individual networks that will comprise a national "network of networks" dedicated to conducting patient-centered health research. MyApnea.Org is one of the Patient-Powered Research Networks within PCORnet, which are organized and governed by patients and their partners and focused on a particular condition.

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