July 20, 2020 — Robert Iannone, Executive Vice President, Research and Development and Chief Medical Officer at Jazz Pharmaceuticals
Narcolepsy is still a widely misunderstood and under diagnosed disorder. Sadly, in children and adolescents, narcolepsy can often be mistaken for laziness or lack of motivation. This means many children living with the life-long condition may experience feelings of loneliness and isolation. Low disease awareness, real-world data collection and limited information-sharing have made facing this life-altering condition all the more challenging for young patients and their families.
To address these needs, I’m proud to share that Jazz has collaborated with Pulse Infoframe, Inc, and leading researchers in the field of pediatric sleep medicine to launch the CATNAP™ Pediatric Narcolepsy Registry – Children, Adolescents, and their providers: The Narcolepsy Assessment Partnership. Understanding the natural progression, diagnosis and treatment patterns of narcolepsy in pediatric patients is a critical part of our mission. The launch of this narcolepsy disease registry for pediatric patients provides a gateway to far greater understanding of the patient and caregiver experience, which in turn, lays the foundation for the development of greatly improved diagnosis and treatment options.
“This project represents a real step forward in our understanding of a very complex and chronic sleep disorder that profoundly impacts the lives of young patients and their families. My colleagues and I are committed to the development of a prospective pediatric narcolepsy registry to better define and delineate this disorder that is made all the more challenging due to its’ relative rarity and its frequent under- and misdiagnosis,” commented Judith Owens MD MPH, Professor of Neurology at Harvard Medical School and the Lead of the Scientific Advisory Board. “As the registry grows, we look forward to analyzing the database and using these data to accelerate the development of new treatments for pediatric narcolepsy.”
The new web-based platform was developed in partnership with Pulse Infoframe, Inc., a recognized leader in building and maintaining patient registries, which will enable the highly secured collection and storage of important health and quality of life information through separate patient and clinician portals. All personal information will then be de-identified (with a study number assigned) for secure HIPPA, and GDPR protection and sharing purposes. Researchers and physicians enrolled in the registry will utilize the patient data to better understand their condition and its natural course, the diagnosis, treatment and impact of this condition on patients and families.
“This effort embodies the values that society prizes most – coming together for a common good and transforming our shared beliefs and hopes into action that advances human health and well-being. In the case of children, this is especially important and especially compelling,” said Dr. Femida Gwadry-Sridhar, Founder and CEO of Pulse Infoframe. “Thanks to the leadership efforts of Jazz Pharmaceuticals in sponsoring this pediatric narcolepsy registry globally, it is being launched on the Pulse Infoframe real world evidence healthie™ platform to advance bold dreams, high ideals and noble intentions to help overcome pediatric narcolepsy and meaningfully improve the lives of those living with it. This is why Pulse Infoframe was created. We couldn’t be more pleased and committed to this vitally important cause.”
For more than 15 years, Jazz has been at the forefront of sleep medicine and we have long understood that sleep disorders can impact every facet of someone’s life. We remain committed to elevating awareness of sleep disorders in both children and adult patients and we expect the data collected from this new registry to add considerable scientific value to the field of narcolepsy. It is one more step in Jazz’s commitment to leading the evolution of sleep medicine for patients with sleep disorders and other neurological conditions.