Press Releases

Global Gene’s RARE-X and Sleep Consortium Launch Sleep Data Collection Initiative to Accelerate Development of Therapies 

June 13, 2024

ALISO VIEJO, Calif.—June 13, 2024—Global Genes’ research program RARE-X opened enrollment for their collaboration with the Sleep Consortium to accelerate the development of effective treatments for central disorders of hypersomnolence and related conditions.

The Sleep Data Collection Initiative, launched in April, is the first consortium on the RARE-X platform for the collection and sharing of patient-owned data. The Sleep Data Collection Initiative is bringing together patient advocacy organizations, researchers, and drug developers looking to address shared symptoms across multiple Sleep-related conditions by leveraging RARE-X’s existing investment in its platform, data governance, and data model.

The RARE-X platform allows patient advocacy organizations to collect structured patient-reported and patient-provided data and make them available to qualified researchers to advance understanding of rare diseases and drive the development of needed therapies. RARE-X currently serves as the data collection platform for 106 patient advocacy groups across 67 rare disorders. 

The Sleep Consortium will collect longitudinal patient-owned data, enabling the pooling of multiple data sets through a series of standardized surveys that are designed by experts in sleep-related research and clinical trial design. The RARE-X platform will enable individuals with primary central disorders of hypersomnolence (CDoH), including narcolepsy, idiopathic hypersomnia, and Kleine-Levin syndrome, to directly share their data with qualified researchers who request to analyze it. 

The data collected includes systematic collection of symptoms, diagnoses, progression, and impacts on quality of life and daily activities for sleep-related conditions. Non-sleep-related symptoms are also being captured, enabling researchers to study sleep disorders both as individual conditions and as a component of more complex diseases.

People interested in participating in the initiative can learn more or register at

“The Sleep Data Collection Initiative is a perfect example of the way we envisioned the RARE-X platform would enable collaboration, avoid duplication of efforts, and provide researchers with robust, high-quality data to drive advances in understanding rare diseases and developing needed therapies to address them,” said Charlene Son Rigby, CEO of Global Genes. “It is the first of many RARE-X collaborative consortia collaborations that will enable rare disease patients to take control of their own data to ensure it is validated, shareable, and put to the best possible use.”

Patient advocacy organizations participating in the Sleep Data Collection Initiative include the Sleep Consortium, Hypersomnia Foundation, Project Sleep, Damm Good Sleep, Day4NAPs, Pwn4pwn, Hypersomnolence Australia, Abranhi, Hypersomnia Alliance. 

“Through this collaboration with RARE-X, we are shining a light on the complexities of central disorders of hypersomnolence,” said Lindsay Jesteadt, CEO of Sleep Consortium. “By empowering patients to share their data, together, we are driving forward the research necessary to develop meaningful treatments and outcomes. This initiative is a beacon of hope for those affected by these conditions, aiming to enhance their quality of life through innovative research and data sharing.” 

Jazz Pharmaceuticals, Avadel Pharmaceuticals,  Takeda Pharmaceuticals, Alkermes,  Zevra Therapeutics, and Centessa Pharmaceuticals are sponsoring the initiative. 

See original press release

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.

Media Contact:
Lauren Alford
Global Genes
[email protected]