Sleep Consortium (SC) and RARE-X, the Global Genes research program and patient-owned data collection platform, today announced a collaboration to launch the Sleep Data Collection Initiative aimed at accelerating the development of effective treatments for central disorders of hypersomnolence (CDoH) and related conditions. 

Phase 1 of the Sleep Data Collection Initiative has four main objectives: bring together a multi-disciplinary workgroup to prioritize sleep domains, develop an expanded sleep-focused data model, create a sleep patient community data collection portal, and the publication of a white paper detailing Phase 1 outcomes. This portal will serve as a platform to collect longitudinal patient-owned data, enabling the connection and pooling of multiple data sets. Ultimately, it will provide researchers around the world with the opportunity to request and analyze high-quality data. This platform will enable individuals with Primary Central Disorders of Hypersomnolence, including Narcolepsy Type 1, Narcolepsy Type 2, Idiopathic Hypersomnia, and Kleine-Levin Syndrome, to directly share their data with researchers and efficiently scale up treatment development opportunities. While this program and Phase 1 development will be expansive, Sleep Consortium will leverage existing investment in the robust platform, data governance and data model that RARE-X has brought forward.

“The Sleep Consortium takes a bold new approach to sleep research putting the patient in the center of its efforts. This initiative demands that the patient be the driver of new research considerations, have ownership of their own data, and serve as an invaluable partner to researchers internationally. This novel approach will leverage advanced technologies to further our understanding of sleep-wake disorders by starting with the debilitating symptom of excessive daytime sleepiness and identifying all the faces of patients who are suffering from it to better define the roads that lead to the development, consequence, and association with excessive daytime sleepiness.” — Anne Marie Morse, Director of Child Neurology and Pediatric Sleep Medicine, Geisinger, Janet Weis Children’s Hospital and Sleep Consortium Scientific Advisor.

This patient-led effort will further disease understanding and help enable the development of treatments that provide meaningful clinical benefit. The patient data collection portal will launch in Q1 2024, and patient-reported data will live alongside other consented, research-ready data sets from global registries, clinical sites, and academic institutions. The data collection portal will also serve to connect patients with qualifying clinical trials and studies. At present, patient-reported outcome measures are inadequate in capturing what truly matters to patients, and detailed, research-grade registry data is lacking. 

“Unraveling the mysteries of narcolepsy and accelerating transformational research will require sophisticated technology and good-old-fashion teamwork. This is why I believe the Sleep Consortium’s new patient data collection platform is poised to become a critical driver for learnings, advancements, and patient-centered progress to improve countless lives.” — Julie Flygare, President and CEO, Project Sleep.

Sleep Consortium includes a diverse group of participants from across the rare disease ecosystem, including individuals with sleep disorders, advocates, advocacy organizations, KOLs, biopharmaceutical companies, and academic researchers. The consortium will lead the effort to collect patient-owned sleep data via the existing RARE-X data and analytics platform. By collecting and federating contemporary high-quality patient data, this initiative will help catalyze new knowledge that will help inform the research and development of new treatments. 

“Hypersomnia Foundation recognizes the urgent need to accelerate research in hypersomnia disorders by working together as a community. It is the unique ability to interconnect data that will transform disease understanding and therapeutic development.” — David Burley, Board Chair, Hypersomnia Foundation.

The SC interconnected data collection effort will not only benefit people diagnosed with CDoH but also expand its reach through the sleep domain build-out with other disease groups within the RARE-X ecosystem. Currently, the RARE-X Platform supports 83 disease communities with ~58% of participants reporting sleep disturbance as a phenotype.

“We are thrilled to be partnering with the Sleep Consortium on this patient-centered initiative that promises to accelerate therapeutic development for central disorders of hypersomnolence. As a company committed to improving the lives of patients, we are excited to take the lead in advancing research and development in this pre-competitive space, and to be working with such a forward-thinking organization that truly puts patients at the center of its efforts.” — Bruce Cozadd, chairman and chief executive officer of Jazz Pharmaceuticals

Founding Advocacy Partners 
Project Sleep 
Hypersomnia Foundation 
Day4NAPs 
PWN4PWN

Founding Industry Partners 
Jazz Pharmaceuticals [Platinum Level] 
Avadel Pharmaceuticals [Gold Level] 
Zevra Therapeutics [Bronze Level] 

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 by creating a global comprehensive, federated database of CDoH omics and clinical data that aims to: 

• Reduce Diagnostic Delays in all communities across the world by identification of new patients with sleep related phenotypes.
• Improve therapeutic options and access for all patients experiencing symptoms of disordered sleep and sleep/wake instability.
• Identify the relationship of symptoms of CDoH across other rare and non-rare disease spaces.
• Increase the understanding of CDoH in under-represented populations.

About Global Genes 
Global Genes is a 501(c)(3) nonprofit rare disease patient advocacy organization dedicated to providing patients and advocates with a continuum of services to accelerate their path from early support and awareness through research readiness. Using a collaborative approach that involves biopharma, researchers, and advocates with data as a central core, Global Genes also enables research and data collection through the RARE-X research program. Through this effort, Global Genes is building the largest collaborative patient-driven, open-data access initiative for rare diseases globally.