Sleep Consortium and RARE-X, the Global Genes research program and patient-owned data collection platform, are collaborating to launch the Sleep Data Collection Initiative to accelerate the development of treatments for central disorders of hypersomnolence 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 publish 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 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 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,” says Anne Marie Morse, DO, director of child neurology and pediatric sleep medicine, Geisinger, Janet Weis Children’s Hospital, and Sleep Consortium scientific advisor, in a release. “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.” 

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, according to a release from Sleep Consortium. 

“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,” says Julie Flygare, president and CEO of Project Sleep, a founding advocacy partner, in a release.

Sleep Consortium includes a diverse group of participants from across the rare disease ecosystem, including individuals with sleep disorders, advocates, advocacy organizations, 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,” says David Burley, board chair of Hypersomnia Foundation, another founding advocacy partner, in a release. 

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