Child and Adolescent Registry for Participants With Narcolepsy
- Conditions
- Narcolepsy
- Registration Number
- NCT04899947
- Lead Sponsor
- Jazz Pharmaceuticals
- Brief Summary
CATNAP is a patient registry designed to improve the understanding of the natural history of narcolepsy in pediatric patients. Descriptive statistics on disease characteristics will be performed.
The study has 16 active clinical sites and a virtual site that widens participation to anywhere in the United States. For more information about the study or to access the Online Patient Enrollment System, visit the CATNAP website: https://catnap.healthie.net/welcome or email catnap@pulseinfoframe.com. The Online Patient Enrollment System, CATNAP website, can also be found in the references section.
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- RECRUITING
- Sex
- All
- Target Recruitment
- 500
- Any child or adolescent with a physician-confirmed diagnosis of narcolepsy
- Age less than 18 years
- Willing to participate in the Registry and complete the informed consent form
- Able to participate in English based registry
- Age 18 years or more
- Fail to complete the informed consent form
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Improve Understanding of Natural History of Pediatric Narcolepsy Up to 4 years Characterize the Presentation, Identification, and Diagnosis of Narcolepsy in Pediatric Participants Up to 4 years Understand Treatment Practices and Outcomes Captured by Treatment Regimen and Rational for Changes Up to 4 years
- Secondary Outcome Measures
Name Time Method Caregiver Work Limitations Questionnaire (C-WLQ) Up to 4 years Change in Caregiver Well-being Measured by the Caregiver Well-Being Scale (Shortened) Up to 4 years Change in frequency of child ehavioral problems utilizing the Child Behavior Checklist (CBCL) Up to 4 years Work Productivity and Activity Impairment (WPAI) Up to 4 years Improvements in Quality of Life (QoL) as Measured by Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD) Questionnaire Up to 4 years QoL - Pediatric Quality of Life Inventory (PedsQL) Up to 4 years Patient Reported Outcomes Measurement Information System (PROMIS) Peer Relationship-Parent Proxy Short Form v2.0 Up to 4 years Change in Level of Social Support using the Social Support Survey Instrument Up to 4 years Change in Pittsburgh Sleep Quality index (PSQI) scores Up to 4 years
Trial Locations
- Locations (25)
Children's Hospital of the King's Daughters
🇺🇸Norfolk, Virginia, United States
Stanford University
🇺🇸Redwood City, California, United States
Children's Hospital of Philadelphia
🇺🇸Philadelphia, Pennsylvania, United States
Ohio Sleep Medicine Institute
🇺🇸Dublin, Ohio, United States
Lurie Children's Hospital of Chicago
🇺🇸Chicago, Illinois, United States
Johns Hopkins University
🇺🇸Baltimore, Maryland, United States
University Hospitals Cleveland Medical Centre (UHCMC)
🇺🇸Cleveland, Ohio, United States
Texas Children's Hospital (Baylor College of Medicine)
🇺🇸Houston, Texas, United States
University of California San Diego
🇺🇸San Diego, California, United States
Cincinnati Children's Hospital Medical Center
🇺🇸Cincinnati, Ohio, United States
University of Arkansas
🇺🇸Fayetteville, Arkansas, United States
Arkansas Children's Research Institute
🇺🇸Little Rock, Arkansas, United States
Boston Children's Hospital
🇺🇸Boston, Massachusetts, United States
Children's National Medical Center
🇺🇸Washington, District of Columbia, United States
Children's Research Institute
🇺🇸Washington, District of Columbia, United States
Mayo Clinic
🇺🇸Rochester, Michigan, United States
Trinity Health-Michigan
🇺🇸Grand Rapids, Michigan, United States
St. Luke's Hospital
🇺🇸Chesterfield, Missouri, United States
Northwell Health
🇺🇸Manhasset, New York, United States
Geisinger
🇺🇸Danville, Pennsylvania, United States
Nationwide Children's Hospital
🇺🇸Columbus, Ohio, United States
Phoenix Children's Hospital
🇺🇸Phoenix, Arizona, United States
University of South Florida
🇺🇸Tampa, Florida, United States
Children's Mercy Hospital
🇺🇸Kansas City, Missouri, United States
University of Arizona
🇺🇸Tucson, Arizona, United States