NCT05373979

Development and Validation of Pediatric Narcolepsy Patient Reported Outcomes Scale

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

• Status: Completed
• Phase: —
• Study type: Observational
• Enrollment: 212 (actual)
• Sponsor: Boston Children's Hospital · Academic / Other
• Sex: All
• Age: 9 Years – 17 Years
• Healthy volunteers: Not accepted

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.

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

Conditions

• Narcolepsy
• Obstructive Sleep Apnea

Timeline

• Start date: 2019-04-02
• Primary completion: 2024-05-30
• Completion: 2024-05-30
• First posted: 2022-05-13
• Last updated: 2025-02-13

Locations

1 site across 1 country: United States