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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
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:

Development and Validation of Pediatric Narcolepsy Patient Reported Outcomes Scale NCT05373979 Gillian Heckler Gillian.Heckler@childrens.harvard.edu