What Is 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 Central Disorders of Hypersomnolence (CDoH) and related diseases.
Our Mission
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 which 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
- Power Patient Progress leveraging break-through technology
Sleep Consortium (is):
of CDoH omics and clinical data that is accessible to:
- Patients and Families
- Patient Advocacy Organizations
- Researchers
- Clinicians
- Academic Institutions
- Therapeutic Developers
- Industry Partners
- Regulatory Bodies
Built on the principle that all data is patient owned and governed, neither Sleep Consortium or any other affiliated organization or agency participates in owning, selling or purchasing of patient data. Patients are front and center in managing their data and control all aspects of stewardship, access and consent. Patients utilize their uploaded individual and family digital medical records as a means of personal agency through the Sleep Consortium portal.
We partner with patients, families, advocacy groups, data scientists, governance, standards and domain experts, tech project leaders, patient engagement support teams, global researchers and federal and industry partners to bring about next-generation evolution of sleep health.
…to cultivating a community that elevates health, gender and social equity and prioritizes diversity through inclusive leadership, engagement with international multi-disciplinary teams and broad spectrum, patient representation. Sleep Consortium engages with like-minded leaders and organizations sharing this vision of global equity and access to address the complex and unmet needs of all affected by CDoH.
…accessible from all time zones. Sleep Consortium’s curated and centralized database hosts a real-time interoperable ecosystem and provides gated and consented access to individuals and families.
In partnership with RARE-X, information and test results (Bio-markers, Bio-samples, PSG, MSLT and WGS) not currently connected with other databases is cross-pollinated across multiple disease spaces breaking down current data silos generating new sharable data.
While our primary focus is Central Disorders of Hypersomnolence, Sleep Consortium is symptom led-meaning we address symptoms of sleep disorders (such as Excessive Daytime Sleepiness) across rare and non-rare disease spaces regardless of the primary diagnosis of each individual patient.
…through our partnership with RARE-X who have worked to meet and exceed HIPPA standards.
…to utilize patient experience data in open label design and development of basket trials in the Rare and Non-Rare Disease Spaces.
…advancing research in CDoH, supporting industry, and accelerating the development of new targeted therapies in a pre-competitive space.
…by the stratification (grouping) of patients—based on common characteristics and diagnoses, age and medical history through the patient portal with a view to identifying comorbidities and diagnostic criteria.
The Sleep Consortium’s vision of a precompetitive data sharing collaborative is groundbreaking. RARE-X is honored to support this progressive thinking, which will truly accelerate our understanding of sleep disorders, as well as therapy development. RARE-X is proud to collaborate with the Sleep Consortium to create a foundational architecture for data collection in the sleep space.