New Patient-Powered Research Community for Sleep Apnea
The web-based community portal, www.MyApnea.Org, is now recruiting patients with and those at risk for sleep apnea to join a growing community of patients, caregivers and researchers to better understand sleep apnea through information sharing, support and research. The network brings together patients, caregivers, 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.
Through MyApnea.Org, members have access to well vetted health information to help them manage their condition, easy-to-understand research articles and a dynamic discussion forum enabling them to connect with and learn from others like them. Initially, researchers will focus on questions and results that are most important, practical and empowering to those impacted by sleep apnea. Members are able to suggest a research idea that they would like to know more about and this suggestion can then be voted on by other members of the community. The highest ranking questions are periodically examined, and researchers explore the existing scientific literature related to that question. If there is a significant amount of data on the topic, then it is synthesized and a plain language summary is provided to members. If researchers discover a gap in knowledge, then the question will be endorsed as a topic for future research.
Joining MyApnea.Org requires members to securely share anonymized personal health information. Surveys are short and can be completed on a smartphone, tablet or laptop. MyApnea.Org is asking members to make a minimum commitment of two years, but the hope is people will stay longer. You can contact firstname.lastname@example.org with any questions or to request promotional materials.