Introduction:

The DREAMS Portal is a partnership between RARE-X and the Sleep Consortium that brings together patient communities, caregivers, advocacy leaders, and researchers to accelerate understanding and treatment development for central disorders of hypersomnolence such as narcolepsy, idiopathic hypersomnia, and related conditions. Together, we aim to

1. Improve knowledge & understanding about central disorders of hypersomnolence.
2. Decrease time to diagnosis for individuals impacted by central disorders of hypersomnolence.
3. Accelerate the development of meaningful therapies & treatment options for everyone with a hypersomnolence disorder.

Through the use of RARE-X’s secure, patient-owned data collection platform, we are dismantling silos in research for central disorders of hypersomnolence and enabling individuals and caregivers to contribute real-world data that reflects the true lived experience of these rare sleep disorders. This initiative empowers patients to improve knowledge & understanding of sleep disorders, shape research priorities, and support earlier diagnosis, better treatment strategies, and inclusive clinical trials.

Patients and caregivers can participate in the DREAMS Portal by completing a series of standardized, validated, research-ready surveys, or patient-reported Clinical Outcome assessment Measures (COAs) to capture sleep patterns, symptom severity, treatment outcomes, and overall quality of life. The central disorders of hypersomnolence dataset on RARE-X is de-identified and accessible via an open science model to qualified researchers. In addition, clinical diagnosis, genetic testing, and family history data is captured. Branching logic enables deep data capture without overtaxing patients and caregivers.

Together, we are removing barriers for data collection and sharing by utilizing a patient-owned data platform designed to engage a more diverse patient population, accelerate research, and support clinical trial success. This work fuels innovation by giving researchers and drug developers the information they need to better understand hypersomnolence and advance therapeutic development.

Achievements & Learnings

To date, the DREAMS Portal has reached several critical milestones towards its mission:

Identified Research Priorities and 6 COA Measures for Children, 7 for Adults
The Sleep Consortium convened a multidisciplinary expert advisory group including clinicians, researchers, and patient leaders to identify the most relevant patient-reported COAs (Clinical Outcome Assessments) for capturing the severity of symptoms and the lived experience of central disorders of hypersomnolence. These validated tools were selected to ensure that data collected reflects the most impactful symptoms and generates insights across ages and disease stages.COAs were selected to track patient reported outcomes for sleep disruption, daily fatigue, cognitive effects, and co-occurring mental and physical health issues.

Publication Establishing COAs for Clinical Research
Preliminary findings from the initial data collection effort have informed a forthcoming co-authored publication. This collaboration among patient leaders and scientific experts has established a core set of COAs to be used in clinical research.

Inclusive Participation Strategy
The Sleep Consortium has engaged a diverse group of participants, including individuals who are diagnosed with a disorder such as narcolepsy or idiopathic hypersomnia and those who are undiagnosed but symptomatic. This inclusive model aims to shorten the diagnostic journey and capture a fuller picture of how sleep disorders affect people across demographics and disease stages.