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Development and Validation of Pediatric Narcolepsy Patient Reported Outcomes Scale — PN-PROS  

Obstructive Sleep Apnea Clinical Trial

Official title:
Development and Validation of Pediatric Narcolepsy Patient Reported Outcomes Scale (PN-PROS)

Clinical Trial 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.

Clinical Trial 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 ;

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT05373979
Study type Observational
Source Boston Children's Hospital
Contact Gillian Heckler
Phone 617-919-6212
Email Gillian.Heckler@childrens.harvard.edu
Status Recruiting
Phase
Start date April 2, 2019
Completion date April 30, 2023
View Details
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