Global Genes’ RARE-X platform has opened enrollment for a new initiative with the Sleep Consortium to collect patient data and advance research on central disorders of hypersomnolence.


Summary: Global Genes’ RARE-X platform and the Sleep Consortium have launched the Sleep Data Collection Initiative, now open for enrollment. This initiative aims to gather and share patient-owned data on central disorders of hypersomnolence, such as narcolepsy and idiopathic hypersomnia. The collected data will help researchers develop targeted treatments and improve understanding of these rare conditions.

Key Takeaways:

  • The Sleep Data Collection Initiative is now accepting participants to collect data on sleep-related disorders.
  • The initiative involves patient advocacy organizations, researchers, and pharmaceutical sponsors working together.
  • The project aims to enhance understanding and treatment of central disorders of hypersomnolence through robust data collection and sharing.

Global Genes’ research program RARE-X opened enrollment for its collaboration with the Sleep Consortium to accelerate the development of 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.

Advancing Understanding of Rare Diseases

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, including narcolepsy, idiopathic hypersomnia, and Kleine-Levin syndrome, to directly share their data with qualified researchers who request to analyze it.

Data Collection

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.

“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,” says Charlene Son Rigby, CEO of Global Genes, in a release. “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.”

Collaboration and Sponsorship

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,” says Lindsay Jesteadt, CEO of Sleep Consortium, in a release. “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.

People interested in participating in the initiative can learn more or register at https://rare-x.org/sleepconsortium/.

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