The U.S. Food and Drug Administration (FDA) has placed a high priority on hearing directly from individuals with lived experience about what it's like to live with medical conditions. On June 8, 2018, the American Sleep Apnea Association (ASAA), working with several other organizations, will host the AWAKE Sleep Apnea meeting so that FDA can hear directly from people living with sleep apnea and their family members about their experiences.
This survey provides a way for members of the sleep apnea community to share their experiences with FDA, researchers, and ASAA. It is designed to collect information about symptoms, impacts on daily life, and how individuals are managing their condition with medical and supportive treatment approaches. These are the topics that FDA is most interested in, to help them understand patient and family/caregiver perspectives as new medical products (medications, medical devices, etc.) are being developed and evaluated for safety and effectiveness.
Here is some additional information to keep in mind as you work through this survey:
- If you are a person with sleep apnea (diagnosed or not) or a family member, partner, or caregiver (someone in close, regular contact with the person living with sleep apnea), we welcome you to participate in this survey and the June 8 meeting - in-person or by live webcast. (You can find more information about it at www.awakesleepapnea.org.) For most questions, respond on behalf of the person in your life who has sleep apnea. A few questions ask about your own point of view.
- Answer questions to the best of your ability. Only the first question requires an answer to proceed; the rest are optional.
- You can work on the survey a bit at a time and your answers will be saved as you move from page to page.
- You may learn new information about sleep apnea, its diagnosis and treatment from this survey.
- There are 6 sections of this survey. Depending on how much information you choose to share in the open comment fields, the survey may take 12-18 minutes to complete. Please pace yourself!
- You can leave the survey and come back to it if you use the same link to re-enter. Your answers will be saved at the end of each page.
- All the responses are anonymous and completely confidential.
We will provide some interim results of the survey at the June 8 meeting and will include a final analysis in the meeting report that will be made publicly available later this summer. Demographic information is requested to help identify patient subgroups and help document the full breadth of experience across the sleep apnea community.
We greatly value your perspective and the time and energy you'll invest. Please feel free to share the survey link with others whose lives are affected by sleep apnea, including family members and caregivers.
Click the "NEXT" button to proceed with the survey!