Illuminate Brain Fog

Join us in helping to ILLUMINATE BRAIN FOG

To leverage learnings from the Illuminate Hypersomnia initiative, Sleep Consortium is excited to launch Illuminate Brain Fog, a new research initiative focused on improving how brain fog is defined, measured, and understood in people living with Central Disorders of Hypersomnolence (CDoH).

Sleep Consortium has partnered with RARE-X to host this survey series on the DREAMS Portal to capture insights from adults affected by narcolepsy (with or without cataplexy) and idiopathic hypersomnia (IH).

Your survey responses will help evaluate how well current tools capture the true experience of living with brain fog and will guide development of a more comprehensive, patient-centered measurement scale. These learnings will support future therapy development and improve clinical care.

Who Can Participate?

We invite adults aged 18 and older affected by narcolepsy (with or without cataplexy) and IH worldwide to enroll in this initiative to deepen our understanding of brain fog by completing a series of short surveys. We are committed to representing the full breadth of experiences across these communities. All responses will be confidential.

Note: Currently, all surveys and materials are available in English only.

Steps to Participate

STEP 1: Submit a short questionnaire

Complete our interest questionnaire to help us learn a bit more about you. Your responses will help us guide you through the process.

START THE QUESTIONNAIRE

STEP 2: Onboarding

After submitting the questionnaire, eligible participants will be invited to attend a live, virtual onboarding session to learn how to join the portal, contribute initial health-related information, and access the survey series. 

STEP 3: Complete the survey series

Once onboarding is completed, participants can begin the survey series in the DREAMS Portal. Participants can expect the entire survey series to take about an hour, from account creation through completion of the essential survey set. A “save and return” feature allows participants to pause as needed and return when they’re able. As a series, they are designed to assess the full-body impacts of these sleep disorders, with a special focus on brain fog.

Frequently Asked Questions

For more information on data privacy and the RARE-X Data Collection Program in the DREAMS Portal, please visit https://rare-x.org/sleepconsortium/ and review the full list of FAQs at the bottom of the page.

After creating your DREAMS Portal account, you’ll immediately be prompted to complete a brief “Head-to-Toe” survey that inquires about effects on each body system. Account creation and the Head-to-Toe survey together take approximately 35 minutes. Based on your responses to the Head-to-Toe survey, you’ll be assigned additional short surveys specific to the affected body system, which may take up to 5-15 minutes more, depending on your health history.

Once those steps are complete, participants will take a core series of three short brain fog surveys, which together take about 15 minutes.

The DREAMS Portal data repository is part of the RARE-X research program. RARE-X is a non-profit organization created by leaders in the fields of patient advocacy, medical research, biopharma, and technology. Its mission to accelerate diagnosis, disease understanding, and development of future treatments and cures across rare diseases aligns with Sleep Consortium’s mission to accelerate next generation research, disease understanding and therapy development for those living with Central Disorders of Hypersomnolence (CDoH) and related diseases. Read more about the benefits of our partnership here.

In addition, our partnership with Rare-X provides the following services:

    • Data governance and security (exceeding HIPAA standards)
    • Legal support
    • Inter-connection of data across multiple diseases
    • Technical support and portal domain maintenance/updates

Sleep Consortium collects and stores health-related information (data) about patients with CDoH from patients and caregivers (not doctors). With your permission, your de-identified data will be shared with researchers and patient organizations associated with these conditions worldwide.

Yes. All participants are asked to follow the three participation steps outlined above, including completing the questionnaire and attending an onboarding session, even if they already have a DREAMS Portal account. The Illuminate Brain Fog survey series is new to the portal, and surveys will be completed in a specific order.

All participants will need to provide informed consent for RARE-X to share information about their survey progress as a part of the onboarding process. Your personally identifiable information (name and email) will be used solely for administrative purposes, including tracking survey progress.

Maintaining your privacy is very important to us. Your name and other personal identifiers will be removed from the data and replaced with a unique code number before data is shared with researchers. Data is encrypted (scrambled) when stored for added security.

If you have any questions or need assistance with the survey series, please contact us at info@sleepconsortium.org.

Questionnaire

Demographic info

Name(Required)
MM slash DD slash YYYY
Which conditions have you ever been diagnosed with?(Required)
(Check all that apply)
Which condition do you consider to be the most appropriate diagnosis based on your lived experience?(Required)
Select one
What is your country of residence?(Required)

Brain fog

Brain fog is a feeling that your thinking isn’t as clear or sharp as usual. It can feel like your mind is slow, cloudy, or hard to focus. You might have trouble concentrating, remembering things, finding the right words, or keeping track of what you are doing. Some people describe it as:
  • Thinking through mud or a fog
  • Losing your train of thought mid-sentence
  • Needing extra time to understand and respond
  • Forgetting simple things, like why you walked into a room
It deals with attention, memory, and mental clarity.