Narcolepsy Registry for Children and Adolescents Under 18 to Understand Disease and Treatment

What this Trial Is About

Researchers are collecting data to better understand narcolepsy in children and adolescents through the CATNAP patient registry. This observational study focuses on describing the natural history, presentation, diagnosis, and treatment outcomes of pediatric narcolepsy. The study aims to provide insights over a period of up to four years to improve knowledge about this condition. Participants with narcolepsy under 18 years old are invited to join the registry, which includes 16 active clinical sites and a virtual site to allow participation across the United States. Participants contribute information over up to four years without receiving any experimental treatments, as this is an observational study designed to gather data on disease characteristics and care practices. During the study, participants and their caregivers complete questionnaires and assessments about quality of life, sleep quality, behavior, social support, and caregiver well-being. Data is collected regularly to monitor treatment practices and outcomes, as well as changes in patient and caregiver experiences. This information helps researchers understand the impact of narcolepsy and its management in young patients over time.

Child and Adolescent Registry for Participants With Narcolepsy