Help to Illuminate Hypersomnia by taking the survey!
The Illuminate Hypersomnia initiative includes a survey and a live meeting called an “externally led patient-focused drug development meeting” (or EL-PFDD) taking place on April 11, 2024. Your voice – and your light – are essential to illuminating hypersomnia and leading the way to improved treatment and care.
The Illuminate Hypersomnia survey aims to gather insights into the experiences of those affected by IH, including their diagnostic journeys, what it’s like to live with IH, and views on current and future treatments. This survey is open to adults living with IH (age 18 and older) and adult caregivers or care partners of people of any age who live with IH. It has been developed with help from people living with IH, caregivers, university researchers studying IH, and medical specialists who provide care to people with IH.
- Responses to this survey will help identify areas of unmet need, pinpoint symptoms that pose the greatest burdens, and define what degree of treatment improvement would make a meaningful difference in the lives of people with IH and those closest to them.
- Responses will help to raise awareness of IH and inform future research, drug development, and healthcare practices.
- Responses received before April 11, 2024, will help inform the EL-PFDD meeting planning.
- Data from the survey – including any responses received after the meeting through May 11, 2024 – will be shared in the “voice of the patient” report released after the EL-PFDD meeting. Data may also be used to develop manuscripts for publication in one or more research journals.
- The survey is anonymous and optional. The first step will be to review an overview of the survey and provide your informed consent.
- If you choose to participate, take your time to respond to the questions thoughtfully and openly.
- Answers should reflect your own experiences or, if you are a caregiver or care partner, the experiences of the person living with IH.
- The survey has 67 multiple choice and open text questions. Answers you give to some questions may prompt follow-up questions, so it’s possible you won’t be asked to answer all 67 questions.
- We expect you may need 45-90 minutes to complete the survey, depending on how much detail you choose to share in open text boxes. We know how valuable your time is, so please review the “breaks and reminders” section to learn how to complete the survey in more than one session.
- Take the survey on a computer, if possible. On a computer screen you can see a fuller picture of the questions and response options. Open text questions may also be easier to complete using a computer keyboard.
- If you are taking it on a mobile device, a tablet, or a computer enabled by a speech recognition application, you may be able to use voice-to-text to complete open-text questions. (For example, in Windows, try pressing the Windows key + H.)
- You can provide as much detail as you feel comfortable sharing. You can return to earlier questions if you need to change an answer or add more details.
- You may want to have medication bottles or paperwork from your doctor or pharmacy available to complete a section focused on treatments.
- Taking breaks is encouraged, and the survey platform called Alchemer makes it easy for you to pick up where you left off.
- A bar at the bottom of each screen will show you your progress through the sections.
- When you’re ready for a break, click “Save and continue later” in the bottom right corner of the screen. Enter your email address and Alchemer (the survey platform) will send you an email with a link to your saved survey responses. Save this email for future reference. You’ll go back to that email from Alchemer and click the link to pick up where you left off.
- To find your survey link, search in your email for that reminder email from “Alchemer <noreply@alchemer.com>” with a subject line of “[Reminder] Don’t forget to complete the response you started.”
- If you’d like to opt-in to a nudge to finish the survey, send an email to PFDD@sleepconsortium.org with “Survey reminder requested” in the subject line. To keep the survey anonymous, we won’t have access to your link, but we will send a reminder along with the instructions so you can find the link in your email.
- Your privacy is important to us, and all responses are completely anonymous.
- This survey and all supporting materials have been reviewed by an independent Institutional Review Board or IRB. IRBs review research studies to ensure that they comply with applicable regulations, meet commonly accepted ethical standards, follow institutional policies, and adequately protect research participants.
If you have questions or problems related to the survey, contact the Illuminate Hypersomnia team at PFDD@sleepconsortium.org. You can also use this email to reach out to us to request a personal reminder note!
