Clinical Outcomes From Treatment and Evaluation of Obstructive Sleep Apnoea in Children With Down Syndrome

NCT ID: NCT06030349

Last Updated: 2024-02-12

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

200 participants

Study Classification

OBSERVATIONAL

Study Start Date

2022-11-28

Study Completion Date

2027-12-28

Brief Summary

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The goal of this observational study is to learn about the use of non-invasive ventilation for treatment of obstructive sleep apnoea syndrome in children with Down Syndrome. The main questions it aims to answer are:

* What is the impact of non-invasive ventilation on sleep behaviours and quality of life?
* What barriers are faced by children and their families in establishing tolerance to non-invasive ventilation?

Participants will be asked to complete questionnaires before and after starting treatment. Researchers will compare this data with the results of sleep studies and non-invasive ventilator downloads recorded as part of standard medical care. A sub-group of up to 20 participants will be invited to take part in 45-60 minute interviews exploring expectations, experiences and barriers encountered during non-invasive ventilation therapy.

Detailed Description

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Our aim is to examine the impact of non-invasive ventilation for treatment of obstructive sleep apnoea syndrome in children with Down Syndrome on behavioural and quality of life outcomes and to establish the specific barriers experienced in establishing adherence to treatment.

Information from clinical assessment, sleep studies and device downloads recorded as part of standard care will be combined with questionnaire data to assess for changes in behaviour and quality of life. All participants will undergo questionnaire assessment of barriers experienced. A sub-group of up to 20 participants will be invited to take part in 45-60 minute semi-structured interviews exploring expectations, experiences and barriers encountered.

Conditions

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Obstructive Sleep Apnea Down Syndrome Quality of Life Behavior Adherence, Treatment

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Standard

In addition to data from clinical assessment, sleep studies and non-invasive ventilator downloads recorded as part of standard care participants will undergo questionnaire assessment of behaviour, quality of life and barriers to tolerating treatment. Participants aged 3 years and above will receive the Child Sleep Habits Questionnaire, Obstructive Sleep Apnoea-18 questionnaire and Adherence Barriers to CPAP (Continuous Positive Airway Pressure) Questionnaire. Participants aged 6 months to 3 years will receive the Brief Infant Sleep Questionnaire, Infant Toddler Quality of Life - Short Form 47, Obstructive Sleep Apnoea -18 Caregiver Concern Domain and a modified version of the Adherence Barriers to CPAP Questionnaire.

Non-invasive ventilation

Intervention Type DEVICE

Non-invasive ventilation

Advanced

In addition to all elements of the standard testing group, a sub-group of up to 20 participants will be invited to take part in 45-60 minute semi-structured interviews exploring expectations, experiences and barriers encountered.

Non-invasive ventilation

Intervention Type DEVICE

Non-invasive ventilation

Interventions

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Non-invasive ventilation

Non-invasive ventilation

Intervention Type DEVICE

Eligibility Criteria

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Inclusion Criteria

* Individuals with a confirmed diagnosis of Down Syndrome where a clinical decision has been made to initiate respiratory support with non-invasive ventilation.
* Obstructive Apnoea Hypopnoea Index \> 2 episodes/hour or where sleep disordered breathing symptoms occur in combination with an Apnoea Hypopnoea Index \> 1 episode/hr. - English language proficiency.
* Age ≥ 4 months at the commencement of therapy.

Exclusion Criteria

* Individuals not willing to comply with study procedures or assessments.
* Individuals for whom ventilatory support devices are already prescribed and those with artificial airways.
* Individuals on clinical trials of investigational support therapies.
Minimum Eligible Age

6 Months

Maximum Eligible Age

16 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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University of Edinburgh

OTHER

Sponsor Role collaborator

Birmingham Children's Hospital

OTHER

Sponsor Role collaborator

Belfast Health and Social Care Trust

OTHER

Sponsor Role collaborator

University Hospital Southampton NHS Foundation Trust

OTHER

Sponsor Role collaborator

University of Dublin, Trinity College

OTHER

Sponsor Role collaborator

Children's Health Ireland

OTHER_GOV

Sponsor Role lead

Responsible Party

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Sheila Javadpour

Clinical Lead for Respiratory Sleep Medicine

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Sheila Javadpour

Role: PRINCIPAL_INVESTIGATOR

Children's Health Ireland

Locations

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Trinity College Dublin

Dublin, , Ireland

Site Status RECRUITING

Children's Health Ireland

Dublin, , Ireland

Site Status RECRUITING

Royal Belfast Hospital for Sick Children

Belfast, , United Kingdom

Site Status NOT_YET_RECRUITING

Birmingham Children's Hospital

Birmingham, , United Kingdom

Site Status NOT_YET_RECRUITING

Royal Hospital for Children & Young People

Edinburgh, , United Kingdom

Site Status NOT_YET_RECRUITING

Southampton Children's Hospital

Southampton, , United Kingdom

Site Status NOT_YET_RECRUITING

Countries

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Ireland United Kingdom

Central Contacts

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Roy G Stone

Role: CONTACT

0035314282626 ext. 604

Facility Contacts

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Ruth Monaghan

Role: primary

Roy G Stone

Role: primary

0035314282626 ext. 604

Dara O'Donoghue

Role: primary

Priti Kenia

Role: primary

Florian Gahleitner

Role: primary

Hazel Evans

Role: primary

Catherine M Hill

Role: backup

Other Identifiers

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REC137-22

Identifier Type: -

Identifier Source: org_study_id

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