ClinicalTrials.gg
Status unknownNCT04899947Updated Aug 15, 2024

Child and Adolescent Registry for Participants With Narcolepsy

An observational study in Narcolepsy, sponsored by Jazz Pharmaceuticals. Status unknown at 25 sites in United States. Open to participants aged Up to 17 Years. Per ClinicalTrials.gov, last updated 2024-08-15.

Sponsored by Jazz Pharmaceuticals · Observational

The sponsor has not verified this record recently (last verified Aug 2024), so the status shown — last known as Recruiting — may be out of date.
Study type
Observational
Model
Other
Time perspective
Prospective
Enrollment
500
Ages
Up to 17 Years
Sex
All
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Study 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.

02

Conditions studied

  • Narcolepsy

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03

In context

Narcolepsy

152 studies on the registry are indexed under Narcolepsy; 32 are open to participants now.

This study's planned enrollment of 500 is above the median of 120 across 36 observational studies indexed under Narcolepsy.

Browse Narcolepsy studies →

Lead sponsor

Jazz Pharmaceuticals is the lead sponsor of 173 studies on the registry; 19 are open to participants now.

Of its 42 completed or terminated interventional studies of FDA-regulated products, 31 (74%) have results posted.

Counted across the registry records on this site, refreshed daily.

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Who can participate

Ages eligible
Up to 17 Years
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Probability sample

Study population

Any child or adolescent with a physician-confirmed diagnosis of narcolepsy

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

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

Exclusion Criteria:

  • Age 18 years or more
  • Fail to complete the informed consent form
05

Study design

Observational model
Other
Time perspective
Prospective
Enrollment
500 participants (estimated)
Target follow-up
4 Years
Patient registry
Yes
06

What researchers measure

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

07

Study locations

16 of 25 sites recruiting
  • Phoenix Children's Hospital
    Phoenix, Arizona 85016, United States
    Not yet recruiting
  • University of Arizona
    Tucson, Arizona 85719, United States
    Recruiting
  • University of Arkansas
    Fayetteville, Arkansas 72701, United States
    Not yet recruiting
  • Arkansas Children's Research Institute
    Little Rock, Arkansas 72202, United States
    Recruiting
  • Stanford University
    Redwood City, California 94063, United States
    Recruiting
  • University of California San Diego
    San Diego, California 92093, United States
    Recruiting
  • Children's National Medical Center
    Washington D.C., District of Columbia 20010, United States
    Not yet recruiting
  • Children's Research Institute
    Washington D.C., District of Columbia 20010, United States
    Not yet recruiting
  • University of South Florida
    Tampa, Florida 33620, United States
    Recruiting
  • Lurie Children's Hospital of Chicago
    Chicago, Illinois 60611, United States
    Not yet recruiting
  • Johns Hopkins University
    Baltimore, Maryland 21205, United States
    Not yet recruiting
  • Boston Children's Hospital
    Boston, Massachusetts 02115, United States
    Recruiting
  • Trinity Health-Michigan
    Grand Rapids, Michigan 49503, United States
    Not yet recruiting
  • Mayo Clinic
    Rochester, Michigan 55905, United States
    Not yet recruiting
  • St. Luke's Hospital
    Chesterfield, Missouri 63017, United States
    Recruiting
  • Children's Mercy Hospital
    Kansas City, Missouri 64108, United States
    Recruiting
  • Northwell Health
    Manhasset, New York 11030, United States
    Recruiting
  • Cincinnati Children's Hospital Medical Center
    Cincinnati, Ohio 45229, United States
    Recruiting
  • University Hospitals Cleveland Medical Centre (UHCMC)
    Cleveland, Ohio 44106, United States
    Recruiting
  • Nationwide Children's Hospital
    Columbus, Ohio 43205, United States
    Not yet recruiting
  • Ohio Sleep Medicine Institute
    Dublin, Ohio 43017, United States
    Recruiting
  • Geisinger
    Danville, Pennsylvania 17822, United States
    Recruiting
  • Children's Hospital of Philadelphia
    Philadelphia, Pennsylvania 19104, United States
    Recruiting
  • Texas Children's Hospital (Baylor College of Medicine)
    Houston, Texas 77030, United States
    Recruiting
  • Children's Hospital of the King's Daughters
    Norfolk, Virginia 23507, United States
    Recruiting
08

References and documents

09

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reachedSimilar studies: half by the dot; the band is the middle halfHalf of similar studies reached it by the dot; the band is the middle half, from a quarter to three quarters

Started Oct 2020 (actual). Primary completion is estimated for Oct 2024, 47 months after the start.

Of 18 observational studies under Narcolepsy, half reached primary completion within 61 months of starting (the median), counting those still running; a quarter within 14 and three quarters within 73. This study's planned 47 months is below that.

How these figures are worked out, and which studies are left out of them.

Registered
Apr 30, 2021
First posted
May 25, 2021
StartActual
Oct 10, 2020
Primary completionEst.
Oct 1, 2024
CompletionEst.
Oct 1, 2024
Last update
Aug 15, 2024
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on Aug 15, 2024, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
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Registry details

Key details

Study ID
NCT04899947
Responsible party
Sponsor
First posted
May 25, 2021
Start date
Oct 10, 2020
Primary completion
Oct 1, 2024 (estimated)
Completion
Oct 1, 2024 (estimated)
Last update
Aug 15, 2024

Study contacts

Director Clinical Trial Disclosure & Transparency
Contact
ClinicalTrialDisclosure@JazzPharma.com
2158709177

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is status unknown, as verified in Aug 2024. You cannot join it, but the record below documents what was studied.

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