Groundbreaking Data Collection Platform opens to accelerate research in Central Disorders of Hypersomnolence

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May 14, 2024, 10:18 ET

WEST PALM BEACH, Fla., May 14, 2024 /PRNewswire/ -- Sleep Consortium, in partnership with leading sleep-related patient advocacy organizations, the global patient community, and key industry stakeholders, is thrilled to announce the launch of the Sleep Data Collection Platform (DCP). Designed for individuals and families affected by Central Disorders of Hypersomnolence, the Sleep DCP is set to revolutionize research and enhance understanding of these conditions by leveraging AI and machine learning already enabled by RARE-X—a research program of Global Genes.

On April 29, 2024, the consortium launched the platform with a multi-media announcement and a webinar, uniting the global sleep community. This event showcased the platform's capabilities and discussed how patient-owned and controlled data could dramatically hasten research and the development of new treatments. Experts from RARE-X and key opinion leaders in the sleep community provided a virtual tour of the platform and highlighted its potential to transcend traditional research registries by linking to data on other rare and non-rare diseases, thus broadening the scope of its impact.

Lindsay Jesteadt, Co-Founder and CEO of Sleep Consortium, remarked, "This platform embodies our commitment to placing the control of data back into the hands of those most affected. By empowering patients to manage and share their own data, we not only foster greater autonomy but also accelerate the path to new discoveries and therapies in sleep medicine."

Founded in 2021, Sleep Consortium was established with the mission to reduce diagnostic delays and identify undiagnosed individuals across multiple disease areas, globally. The consortium's founding partners, including patient advocacy organizations and industry stakeholders, have formed a collaborative network dedicated to dismantling research barriers, breaking down data silos and empowering patients.

Claire Wylds-Wright, Co-Founder and CXO of Sleep Consortium, shared her personal motivation: "As a parent and caregiver of a young person with narcolepsy I have been aware for over a decade of the acute need for research in sleep medicine to bridge the gap between the academic journals and the patient journey. What is particularly exciting with the platform is how it empowers patients to engage with the latest technology, backed by an old-fashioned desire for teamwork to advance the research agenda."

The platform's surveys, questionnaires, and scales have been meticulously curated by expert sleep researchers and have been IRB-approved. New patients from different rare and non-rare disease areas will be identified, leading to faster diagnosis.

Sleep's critical role in health, wellness, performance, mood, and quality of life is now more than ever being appreciated, resulting in further scientific evaluation to be used as a tool for better individual outcomes. Sleep Consortium is taking the lead by transforming the clinical and research landscape, with patient-owned data, to increase disease understanding, move towards a future with more treatment options, thereby advancing our field. – Dr. Anne Marie Morse, Director of Child Neurology and Pediatric Sleep Medicine, Geisinger, Janet Weis Children's Hospital and Sleep Consortium Scientific Advisor.

The Sleep Data Collection Platform will create an invaluable personal and collective database for researchers, clinicians, drug development sponsors, regulators, and healthcare professionals. Early and ongoing support from patient advocacy groups such as ABRANHI, Day4Naps, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep, and PWN4PWN have been crucial to community engagement, fostering global relationships.

"Information is power, but only if it is accessible. Sleep Consortium's portal empowers patients to access their data and dictate access to their data. This empowerment via ownership benefits the individual and research." –Matt Horsnell, Patient Advocate

Support for the Sleep Data Collection Platform also includes contributions from Alkermes, Avadel Pharmaceuticals, Jazz Pharmaceuticals, Takeda Pharmaceuticals, Centessa Pharmaceuticals and Zevra Therapeutics.

How to Stay Informed and Get Involved

Visit: https://sleepconsortium.org/contact/ to receive timely updates about the sleep data collection platform and upcoming events and opportunities to drive research in sleep health.

About Sleep Consortium
Sleep Consortium is a registered not-for-profit (501(c)(3)) organization created to accelerate next-generation research, disease understanding, and therapy development for those living with primary and secondary Central Disorders of Hypersomnolence (CDoH) and related diseases. Through ethical data sharing practices, leveraging Artificial Intelligence and Machine Learning, Sleep Consortium is re-imagining data collection.

For more information, visit www.sleepconsortium.org

MEDIA CONTACT:
Lindsay Jesteadt, PhD
Co-Founder and CEO, Sleep Consortium
Email: [email protected]

SOURCE Sleep Consortium