Actively Recruiting

Age: 0 - 17Years
All Genders
ID04899947

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

Led by Jazz Pharmaceuticals · Updated on 2024-08-15

500

Participants Needed

25

Research Sites

N/A

Total Duration

On this page

AI-Summary

What this Trial Is About

Researchers are collecting data to better understand narcolepsy in children and adolescents through the CATNAP patient registry. This observational study focuses on describing the natural history, presentation, diagnosis, and treatment outcomes of pediatric narcolepsy. The study aims to provide insights over a period of up to four years to improve knowledge about this condition. Participants with narcolepsy under 18 years old are invited to join the registry, which includes 16 active clinical sites and a virtual site to allow participation across the United States. Participants contribute information over up to four years without receiving any experimental treatments, as this is an observational study designed to gather data on disease characteristics and care practices. During the study, participants and their caregivers complete questionnaires and assessments about quality of life, sleep quality, behavior, social support, and caregiver well-being. Data is collected regularly to monitor treatment practices and outcomes, as well as changes in patient and caregiver experiences. This information helps researchers understand the impact of narcolepsy and its management in young patients over time.

CONDITIONS

Brief Title

Child and Adolescent Registry for Participants With Narcolepsy

Who Can Participate

Age: 0 - 17Years
All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • 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
Not Eligible

You will not qualify if you...

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

AI-Screening

AI-Powered Screening

Complete this quick 3-step screening to check your eligibility

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Your Study Journey

Screening

Duration - 2 to 4 weeks

Participants are screened for eligibility to participate in the trial.

Long-term Monitoring

Duration - Up to 4 years

Participants are observed to understand the natural history, presentation, diagnosis, and treatment outcomes of pediatric narcolepsy over time.

Trial Site Locations

Total: 25 locations

1

Phoenix Children's Hospital

Phoenix, Arizona, United States, 85016

Not Yet Recruiting

2

University of Arizona

Tucson, Arizona, United States, 85719

Actively Recruiting

3

University of Arkansas

Fayetteville, Arkansas, United States, 72701

Not Yet Recruiting

4

Arkansas Children's Research Institute

Little Rock, Arkansas, United States, 72202

Actively Recruiting

5

Stanford University

Redwood City, California, United States, 94063

Actively Recruiting

6

University of California San Diego

San Diego, California, United States, 92093

Actively Recruiting

7

Children's National Medical Center

Washington D.C., District of Columbia, United States, 20010

Not Yet Recruiting

8

Children's Research Institute

Washington D.C., District of Columbia, United States, 20010

Not Yet Recruiting

9

University of South Florida

Tampa, Florida, United States, 33620

Actively Recruiting

10

Lurie Children's Hospital of Chicago

Chicago, Illinois, United States, 60611

Not Yet Recruiting

11

Johns Hopkins University

Baltimore, Maryland, United States, 21205

Not Yet Recruiting

12

Boston Children's Hospital

Boston, Massachusetts, United States, 02115

Actively Recruiting

13

Trinity Health-Michigan

Grand Rapids, Michigan, United States, 49503

Not Yet Recruiting

14

Mayo Clinic

Rochester, Michigan, United States, 55905

Not Yet Recruiting

15

St. Luke's Hospital

Chesterfield, Missouri, United States, 63017

Actively Recruiting

16

Children's Mercy Hospital

Kansas City, Missouri, United States, 64108

Actively Recruiting

17

Northwell Health

Manhasset, New York, United States, 11030

Actively Recruiting

18

Cincinnati Children's Hospital Medical Center

Cincinnati, Ohio, United States, 45229

Actively Recruiting

19

University Hospitals Cleveland Medical Centre (UHCMC)

Cleveland, Ohio, United States, 44106

Actively Recruiting

20

Nationwide Children's Hospital

Columbus, Ohio, United States, 43205

Not Yet Recruiting

21

Ohio Sleep Medicine Institute

Dublin, Ohio, United States, 43017

Actively Recruiting

22

Geisinger

Danville, Pennsylvania, United States, 17822

Actively Recruiting

23

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States, 19104

Actively Recruiting

24

Texas Children's Hospital (Baylor College of Medicine)

Houston, Texas, United States, 77030

Actively Recruiting

25

Children's Hospital of the King's Daughters

Norfolk, Virginia, United States, 23507

Actively Recruiting

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Research Team

D

Director Clinical Trial Disclosure & Transparency

How is the study designed?

Study Type

OBSERVATIONAL

Masking

N/A

Allocation

N/A

Model

N/A

Primary Purpose

N/A

Number of Arms

0

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