WEST
PALM BEACH, Fla., May 14, 2024
/PRNewswire/ -- Sleep Consortium, in partnership with leading
sleep-related patient advocacy organizations, the global patient
community, and key industry stakeholders, is thrilled to announce
the launch of the Sleep Data Collection Platform (DCP). Designed
for individuals and families affected by Central Disorders of
Hypersomnolence, the Sleep DCP is set to revolutionize research and
enhance understanding of these conditions by leveraging AI and
machine learning already enabled by RARE-X—a research program of
Global Genes.
On April 29, 2024, the consortium
launched the platform with a multi-media announcement and a
webinar, uniting the global sleep community. This event showcased
the platform's capabilities and discussed how patient-owned and
controlled data could dramatically hasten research and the
development of new treatments. Experts from RARE-X and key opinion
leaders in the sleep community provided a virtual tour of the
platform and highlighted its potential to transcend traditional
research registries by linking to data on other rare and non-rare
diseases, thus broadening the scope of its impact.
Lindsay Jesteadt, Co-Founder and
CEO of Sleep Consortium, remarked, "This platform embodies our
commitment to placing the control of data back into the hands of
those most affected. By empowering patients to manage and share
their own data, we not only foster greater autonomy but also
accelerate the path to new discoveries and therapies in sleep
medicine."
Founded in 2021, Sleep Consortium was established with the
mission to reduce diagnostic delays and identify undiagnosed
individuals across multiple disease areas, globally. The
consortium's founding partners, including patient advocacy
organizations and industry stakeholders, have formed a
collaborative network dedicated to dismantling research barriers,
breaking down data silos and empowering patients.
Claire Wylds-Wright, Co-Founder
and CXO of Sleep Consortium, shared her personal motivation: "As a
parent and caregiver of a young person with narcolepsy I have been
aware for over a decade of the acute need for research in sleep
medicine to bridge the gap between the academic journals and the
patient journey. What is particularly exciting with the platform is
how it empowers patients to engage with the latest technology,
backed by an old-fashioned desire for teamwork to advance the
research agenda."
The platform's surveys, questionnaires, and scales have been
meticulously curated by expert sleep researchers and have been
IRB-approved. New patients from different rare and non-rare disease
areas will be identified, leading to faster diagnosis.
Sleep's critical role in health, wellness, performance, mood,
and quality of life is now more than ever being appreciated,
resulting in further scientific evaluation to be used as a tool for
better individual outcomes. Sleep Consortium is taking the lead by
transforming the clinical and research landscape, with
patient-owned data, to increase disease understanding, move towards
a future with more treatment options, thereby advancing our
field. – Dr. Anne Marie Morse,
Director of Child Neurology and Pediatric Sleep Medicine,
Geisinger, Janet Weis Children's Hospital and Sleep Consortium
Scientific Advisor.
The Sleep Data Collection Platform will create an invaluable
personal and collective database for researchers, clinicians, drug
development sponsors, regulators, and healthcare professionals.
Early and ongoing support from patient advocacy groups such as
ABRANHI, Day4Naps, Hypersomnia Alliance, Hypersomnia Foundation,
Hypersomnolence Australia, Hypersomnolence Support Network Japan,
Project Sleep, and PWN4PWN have been crucial to community
engagement, fostering global relationships.
"Information is power, but only if it is accessible. Sleep
Consortium's portal empowers patients to access their data and
dictate access to their data. This empowerment via ownership
benefits the individual and research." –Matt Horsnell, Patient Advocate
Support for the Sleep Data Collection Platform also includes
contributions from Alkermes, Avadel Pharmaceuticals, Jazz
Pharmaceuticals, Takeda Pharmaceuticals, Centessa Pharmaceuticals
and Zevra Therapeutics.
How to Stay Informed and Get Involved
Visit: https://sleepconsortium.org/contact/ to receive
timely updates about the sleep data collection platform and
upcoming events and opportunities to drive research in sleep
health.
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.
For more information, visit www.sleepconsortium.org
MEDIA CONTACT:
Lindsay
Jesteadt, PhD
Co-Founder and CEO, Sleep Consortium
Email: info@sleepconsortium.org
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SOURCE Sleep Consortium