Summary
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.
Conditions
Narcolepsy, Obstructive Sleep Apnea
Recruitment Status
COMPLETED
Detailed Description
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
Eligibility Criteria
Inclusion Criteria:
* Children and adolescents ages 9-17
* Have a diagnosis of narcolepsy type 1, narcolepsy type 2, or mild to moderate obstructive sleep apnea (OSA)
Exclusion Criteria:
* 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
Gender
ALL
Min Age
9 Years
Max Age
17 Years
Download Date
2025-02-13
Principal Investigator
This field has been modified from ClinicalTrials.gov to show a contact specific to Boston Children's.
Primary Contact Information
Gillian.Heckler@childrens.harvard.edu
This field has been modified from ClinicalTrials.gov to show a contact specific to Boston Children's.
For more information on this trial, visit clinicaltrials.gov.
Contact
For more information and to contact the study team: