Child and Adolescent Registry for Participants With Narcolepsy
Children, Adolescents and Their Providers: the Narcolepsy Assessment Partnership (CATNAPTM)
1 other identifier
observational
500
1 country
25
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Oct 2020
Longer than P75 for all trials
25 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
October 10, 2020
CompletedFirst Submitted
Initial submission to the registry
April 30, 2021
CompletedFirst Posted
Study publicly available on registry
May 25, 2021
CompletedPrimary Completion
Last participant's last visit for primary outcome
October 1, 2024
CompletedStudy Completion
Last participant's last visit for all outcomes
October 1, 2024
CompletedAugust 15, 2024
August 1, 2024
4 years
April 30, 2021
August 13, 2024
Conditions
Outcome Measures
Primary Outcomes (3)
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 Outcomes (9)
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
Change in frequency of child ehavioral problems utilizing the Child Behavior Checklist (CBCL)
Up to 4 years
Patient Reported Outcomes Measurement Information System (PROMIS) Peer Relationship-Parent Proxy Short Form v2.0
Up to 4 years
Caregiver Work Limitations Questionnaire (C-WLQ)
Up to 4 years
- +4 more secondary outcomes
Eligibility Criteria
Any child or adolescent with a physician-confirmed diagnosis of narcolepsy
You may qualify if:
- 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
You may not qualify if:
- Age 18 years or more
- Fail to complete the informed consent form
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (25)
Phoenix Children's Hospital
Phoenix, Arizona, 85016, United States
University of Arizona
Tucson, Arizona, 85719, United States
University of Arkansas
Fayetteville, Arkansas, 72701, United States
Arkansas Children's Research Institute
Little Rock, Arkansas, 72202, United States
Stanford University
Redwood City, California, 94063, United States
University of California San Diego
San Diego, California, 92093, United States
Children's National Medical Center
Washington D.C., District of Columbia, 20010, United States
Children's Research Institute
Washington D.C., District of Columbia, 20010, United States
University of South Florida
Tampa, Florida, 33620, United States
Lurie Children's Hospital of Chicago
Chicago, Illinois, 60611, United States
Johns Hopkins University
Baltimore, Maryland, 21205, United States
Boston Children's Hospital
Boston, Massachusetts, 02115, United States
Trinity Health-Michigan
Grand Rapids, Michigan, 49503, United States
Mayo Clinic
Rochester, Michigan, 55905, United States
St. Luke's Hospital
Chesterfield, Missouri, 63017, United States
Children's Mercy Hospital
Kansas City, Missouri, 64108, United States
Northwell Health
Manhasset, New York, 11030, United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, 45229, United States
University Hospitals Cleveland Medical Centre (UHCMC)
Cleveland, Ohio, 44106, United States
Nationwide Children's Hospital
Columbus, Ohio, 43205, United States
Ohio Sleep Medicine Institute
Dublin, Ohio, 43017, United States
Geisinger
Danville, Pennsylvania, 17822, United States
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104, United States
Texas Children's Hospital (Baylor College of Medicine)
Houston, Texas, 77030, United States
Children's Hospital of the King's Daughters
Norfolk, Virginia, 23507, United States
Related Links
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Central Study Contacts
Director Clinical Trial Disclosure & Transparency
CONTACT
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- PROSPECTIVE
- Target Duration
- 4 Years
- Sponsor Type
- INDUSTRY
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
April 30, 2021
First Posted
May 25, 2021
Study Start
October 10, 2020
Primary Completion
October 1, 2024
Study Completion
October 1, 2024
Last Updated
August 15, 2024
Record last verified: 2024-08