Narcolepsy is a chronic neurologic condition, which means that it involves nerve cells and chemicals in the brain. With narcolepsy, the brain is not able to control sleep-wake cycles normally.

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. This can make it hard to do everyday tasks.

Being a child with narcolepsy can severely impact many areas of a child’s life: play, school, extra-curricular activities, social circles, self-esteem…the list goes on. But 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 exist, but they:

• Do not focus on the pediatric population 
• 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 the collection of observational data (e.g., quality of life), health resource utility data, and other relevant data on the activities of daily living. 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.