The purpose of this study is to test a pediatric narcolepsy patient reported outcomes tool to assess pediatric narcolepsy symptoms and their effect on daily functioning and quality of life. The goal is to develop a clinical survey that can improve the care of pediatric narcolepsy.
Narcolepsy, Obstructive Sleep Apnea
WHO IS ELIGIBLE? Children and adolescents with narcolepsy between the ages of 9-17 years Diagnosis must be verified by a signed letter from physician in order to participate Participants must be able to understand the purpose of the study PARTICIPATION DETAILS Upon enrollment participants will receive an email containing a link to complete HIPAA compliant online surveys about narcolepsy symptoms, quality of life, and daily function. Surveys should take no more than 30 minutes. One week later, some participants will receive another email with a link to complete a 10-minute follow up survey
Children and adolescents ages 9-17
Have a diagnosis of narcolepsy type 1, narcolepsy type 2, or mild to moderate obstructive sleep apnea (OSA)
A history of visual or hearing impairment
A co-morbid neurodevelopmental disorder such as autism or schizophrenia
No access to computer/tablet/smart phone to complete questionnaires
June 1, 2022
Primary Contact Information
For more information on this trial, visit clinicaltrials.gov.
For more information and to contact the study team: