Current Environment:

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

Recruiting

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

June 1, 2022

Principal Investigator

Kiran Maski

Primary Contact Information

Gillian Heckler

617-919-6212

Gillian.Heckler@childrens.harvard.edu

For more information on this trial, visit clinicaltrials.gov.

Contact

For more information and to contact the study team: