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NCT Number: NCT04899947

Child and Adolescent Registry for Participants With Narcolepsy

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 [email protected]. The Online Patient Enrollment System, CATNAP website, can also be found in the references section.

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Key information

Conditions

Narcolepsy Disorders of Excessive Somnolence Dyssomnias Mental Disorders Nervous System Diseases Sleep Disorders, Intrinsic Sleep Wake Disorders

Age range

Up to 17 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Phoenix Children's Hospital, Phoenix, Arizona, United States

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Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • 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

Exclusion criteria

  • Age 18 years or more
  • Fail to complete the informed consent form

Treatment and study plan

Primary outcomes

  1. Improve Understanding of Natural History of Pediatric Narcolepsy

    Time frame: Up to 4 years

  2. Characterize the Presentation, Identification, and Diagnosis of Narcolepsy in Pediatric Participants

    Time frame: Up to 4 years

  3. Understand Treatment Practices and Outcomes Captured by Treatment Regimen and Rational for Changes

    Time frame: Up to 4 years

Secondary outcomes

  1. 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

  2. QoL - Pediatric Quality of Life Inventory (PedsQL)

    Time frame: Up to 4 years

  3. Change in frequency of child ehavioral problems utilizing the Child Behavior Checklist (CBCL)

    Time frame: Up to 4 years

  4. Patient Reported Outcomes Measurement Information System (PROMIS) Peer Relationship-Parent Proxy Short Form v2.0

    Time frame: Up to 4 years

  5. Caregiver Work Limitations Questionnaire (C-WLQ)

    Time frame: Up to 4 years

  6. Work Productivity and Activity Impairment (WPAI)

    Time frame: Up to 4 years

  7. Change in Caregiver Well-being Measured by the Caregiver Well-Being Scale (Shortened)

    Time frame: Up to 4 years

  8. Change in Level of Social Support using the Social Support Survey Instrument

    Time frame: Up to 4 years

  9. Change in Pittsburgh Sleep Quality index (PSQI) scores

    Time frame: Up to 4 years

Interested in participating?

Recruiting

Interested in participating?

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Sponsors and collaborators

Lead sponsor

Jazz Pharmaceuticals

Industry

Registry information

Official study title

Children, Adolescents and Their Providers: the Narcolepsy Assessment Partnership (CATNAPTM)

Important dates

Study start
2020
Primary completion
2024
Study completion
2024
First posted
May 25, 2021
Registry last updated
Aug 15, 2024

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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