Benefits To Patients

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Sharing patient owned information by participating in the sleep data collection program is one of the most important things that we can do to make a difference.

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Why Join the Platform?

When you access the Sleep Consortium data collection platform, you not only create your own medical/clinical database, but you will also help accelerate research, the development of new therapies and expand the understanding of sleep disorders interconnecting with rare and non-rare research-ready domains.

The Sleep Consortium data collection portal, provides patients (and caregivers) with controlled access, enabled by RARE-X—a 501(c)(3) specializing in data security, governance, consent, and support.

Individuals and families affected by Central Disorders of Hypersomnolence (CDoH) will benefit from the following when they join the platform:

  • Serves a one-stop personal data hub eliminating the need to complete multiple registries and other clinical databases
  • Personal digitized medical records can be shared with your specialist to help further understand your disease journey
  • Inform researchers of important clinical features and accelerate research
  • Help researchers identify what data is needed for clinical trials
  • Help identify new patients with an undiagnosed sleep disorder across many diverse disease areas
  • Reduce the time it takes to develop and study new treatments and therapies
  • Faster access to medications
  • Accelerate global equity—help identify people from under-represented communities experiencing symptoms of CDoH
  • Helps inform federal databases seeking to identify all populations effected by sleep/wake instability
  • If eligible, you can be selected for clinical trials
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How to Join the Platform

The Patient Portal on the RARE-X platform will be launched in May 2022. An informational webinar  explains step-by-step, how to login and complete the sleep survey. 

Webinar Registration
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Why RAREX?

RARE-X is a 501(c) (3) whose mission aligns with Sleep Consortium. In addition, our partnership provides the following:

  • Governance (exceeding HIPPA standards)
  • Legal support
  • Inter-connection of data across multiple disease spaces
  • Acceleration of research in CDoH and drug development
  • Tech support and portal domain maintenance/updates
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