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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.
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| Measure | Description | Time Frame |
|---|---|---|
| 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 |
| Measure | Description | Time Frame |
|---|---|---|
| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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Any child or adolescent with a physician-confirmed diagnosis of narcolepsy
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Director Clinical Trial Disclosure & Transparency | Contact | 2158709177 | ClinicalTrialDisclosure@JazzPharma.com |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Phoenix Children's Hospital | Not yet recruiting | Phoenix | Arizona | 85016 | United States | |
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| Label | URL |
|---|---|
| Online Patient Enrollment System | View source |
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| 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 |
| Work Productivity and Activity Impairment (WPAI) | Up to 4 years |
| Change in Caregiver Well-being Measured by the Caregiver Well-Being Scale (Shortened) | 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 |
| University of Arizona |
| Recruiting |
| Tucson |
| Arizona |
| 85719 |
| United States |
| University of Arkansas | Not yet recruiting | Fayetteville | Arkansas | 72701 | United States |
| Arkansas Children's Research Institute | Recruiting | Little Rock | Arkansas | 72202 | United States |
| Stanford University | Recruiting | Redwood City | California | 94063 | United States |
| University of California San Diego | Recruiting | San Diego | California | 92093 | United States |
| Children's National Medical Center | Not yet recruiting | Washington D.C. | District of Columbia | 20010 | United States |
| Children's Research Institute | Not yet recruiting | Washington D.C. | District of Columbia | 20010 | United States |
| University of South Florida | Recruiting | Tampa | Florida | 33620 | United States |
| Lurie Children's Hospital of Chicago | Not yet recruiting | Chicago | Illinois | 60611 | United States |
| Johns Hopkins University | Not yet recruiting | Baltimore | Maryland | 21205 | United States |
| Boston Children's Hospital | Recruiting | Boston | Massachusetts | 02115 | United States |
| Trinity Health-Michigan | Not yet recruiting | Grand Rapids | Michigan | 49503 | United States |
| Mayo Clinic | Not yet recruiting | Rochester | Michigan | 55905 | United States |
| St. Luke's Hospital | Recruiting | Chesterfield | Missouri | 63017 | United States |
| Children's Mercy Hospital | Recruiting | Kansas City | Missouri | 64108 | United States |
| Northwell Health | Recruiting | Manhasset | New York | 11030 | United States |
| Cincinnati Children's Hospital Medical Center | Recruiting | Cincinnati | Ohio | 45229 | United States |
| University Hospitals Cleveland Medical Centre (UHCMC) | Recruiting | Cleveland | Ohio | 44106 | United States |
| Nationwide Children's Hospital | Not yet recruiting | Columbus | Ohio | 43205 | United States |
| Ohio Sleep Medicine Institute | Recruiting | Dublin | Ohio | 43017 | United States |
| Geisinger | Recruiting | Danville | Pennsylvania | 17822 | United States |
| Children's Hospital of Philadelphia | Recruiting | Philadelphia | Pennsylvania | 19104 | United States |
| Texas Children's Hospital (Baylor College of Medicine) | Recruiting | Houston | Texas | 77030 | United States |
| Children's Hospital of the King's Daughters | Recruiting | Norfolk | Virginia | 23507 | United States |
| ID | Term |
|---|---|
| D009290 | Narcolepsy |
| ID | Term |
|---|---|
| D006970 | Disorders of Excessive Somnolence |
| D020919 | Sleep Disorders, Intrinsic |
| D020920 | Dyssomnias |
| D012893 | Sleep Wake Disorders |
| D009422 | Nervous System Diseases |
| D001523 | Mental Disorders |
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