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.
Study Type
OBSERVATIONAL
Enrollment
500
Improve Understanding of Natural History of Pediatric Narcolepsy
Time frame: Up to 4 years
Characterize the Presentation, Identification, and Diagnosis of Narcolepsy in Pediatric Participants
Time frame: Up to 4 years
Understand Treatment Practices and Outcomes Captured by Treatment Regimen and Rational for Changes
Time frame: Up to 4 years
Improvements in Quality of Life (QoL) as Measured by Epworth Sleepiness Scale for Children and Adolescents (ESS-CHAD) Questionnaire
Time frame: Up to 4 years
QoL - Pediatric Quality of Life Inventory (PedsQL)
Time frame: Up to 4 years
Change in frequency of child ehavioral problems utilizing the Child Behavior Checklist (CBCL)
Time frame: Up to 4 years
Patient Reported Outcomes Measurement Information System (PROMIS) Peer Relationship-Parent Proxy Short Form v2.0
Time frame: Up to 4 years
Caregiver Work Limitations Questionnaire (C-WLQ)
Time frame: Up to 4 years
Work Productivity and Activity Impairment (WPAI)
Time frame: Up to 4 years
Change in Caregiver Well-being Measured by the Caregiver Well-Being Scale (Shortened)
Time frame: Up to 4 years
Director Clinical Trial Disclosure & Transparency
CONTACT
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Phoenix Children's Hospital
Phoenix, Arizona, United States
NOT_YET_RECRUITINGUniversity of Arizona
Tucson, Arizona, United States
RECRUITINGUniversity of Arkansas
Fayetteville, Arkansas, United States
NOT_YET_RECRUITINGArkansas Children's Research Institute
Little Rock, Arkansas, United States
RECRUITINGStanford University
Redwood City, California, United States
RECRUITINGUniversity of California San Diego
San Diego, California, United States
RECRUITINGChildren's National Medical Center
Washington D.C., District of Columbia, United States
NOT_YET_RECRUITINGChildren's Research Institute
Washington D.C., District of Columbia, United States
NOT_YET_RECRUITINGUniversity of South Florida
Tampa, Florida, United States
RECRUITINGLurie Children's Hospital of Chicago
Chicago, Illinois, United States
NOT_YET_RECRUITING...and 15 more locations
Change in Level of Social Support using the Social Support Survey Instrument
Time frame: Up to 4 years
Change in Pittsburgh Sleep Quality index (PSQI) scores
Time frame: Up to 4 years