Narcolepsy is a sleep disorder whereby the body cannot properly regulate sleep and alertness. Common characteristics include excessive sleepiness, hallucinations, sleep paralysis, and sometimes partial or total loss of muscle control. People who have narcolepsy feel very sleepy during the day and can also fall asleep during normal activities, no matter how hard they try to stay awake. Although there are no cures for this disorder, there are treatments and therapies that may help. CATNAP™, a new registry in partnership with Jazz Pharmaceuticals, is dedicated to narcolepsy in children, will fill a data gap that exists in this young population.
A Lack of Real-World Data in Pediatric Narcolepsy
Being a child with a severe sleep disorder like narcolepsy can severely impact many areas of a child’s life: play, school, extra-curricular activities, social circles, self-esteem…the list goes on. However, medicine currently lacks the data needed to properly quantify, qualify, and track these everyday-life effects of the disorder throughout a child’s life.
Registries in narcolepsy or central hypersomnia exist, but they do not focus on the pediatric population and do not incorporate data input directly from the patients and caregivers. For a more comprehensive view of the patients and their caregivers, collecting information directly from them is much more effective. This can include observational data (e.g., quality of life), health resource utility data, and other relevant data on the activities of daily living (ADL), rather than the infrequent data that are collected at each visit. Such a set-up would also provide the opportunity to collect natural history data – which are currently difficult to ascertain, given the time to diagnosis for many of these patients.
Details about CATNAP
Children, Adolescents and Their providers: the Narcolepsy Assessment Partnership (CATNAP)TM will provide tools to fulfil all these unmet needs. The registry platform will have a patient portal and clinician/researcher portal to capture the relevant data and will provide collaborative and easy-to-use data analysis and visualization tools. Thus, the data collected through this initiative will add valuable scientific information and insight to the field of pediatric narcolepsy.
