Status:

COMPLETED

Investigating the Experience of Living With Down Syndrome and Obstructive Sleep Apnea Syndrome (Stage 1)

Lead Sponsor:

Children's Hospital of Philadelphia

Collaborating Sponsors:

National Institutes of Health (NIH)

National Heart, Lung, and Blood Institute (NHLBI)

Conditions:

Down Syndrome

Obstructive Sleep Apnea

Eligibility:

All Genders

6-17 years

Phase:

NA

Brief Summary

To identify the perceptions, beliefs, and family-relevant outcomes regarding the treatment of obstructive sleep apnea syndrome (OSAS) with positive airway pressure (PAP) in children with Down's Syndro...

Detailed Description

This is a multi-center outpatient study to be performed at two clinical sites: Children's Hospital of Philadelphia and Cincinnati Children's Hospital. Forty Caregivers of children with DS and OSAS tre...

Eligibility Criteria

Inclusion

  • Inclusion Criteria -- Patients
  • Children with DS and OSAS treated with PAP for at least 6 months
  • Children aged between 6 and 17.5 years
  • English proficiency
  • Inclusion Criteria -- Caregivers
  • Parent or legal guardian of an eligible patient subject
  • English proficiency
  • Must live with the patient subject at least 4 nights of the week
  • Exclusion Criteria -- Patients
  • In foster care
  • Diagnosed with major illness, such as leukemia or severe cyanotic congenital heart disease listed for cardiac transplant as these severe diseases may add confounders
  • Exclusion Criteria -- Caregivers
  • Foster parent

Exclusion

    Key Trial Info

    Start Date :

    August 2 2019

    Trial Type :

    INTERVENTIONAL

    Allocation :

    ACTUAL

    End Date :

    August 1 2022

    Estimated Enrollment :

    42 Patients enrolled

    Trial Details

    Trial ID

    NCT04124471

    Start Date

    August 2 2019

    End Date

    August 1 2022

    Last Update

    April 25 2023

    Active Locations (1)

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    Page 1 of 1 (1 locations)

    1

    The Children's Hospital of Philadelphia

    Philadelphia, Pennsylvania, United States, 19104