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New web tool aims to help families navigate tough choices on home ventilation for children

NCT ID NCT06102330

Knowledge-focused Sponsor: Johns Hopkins University Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 16, 2026 · Last updated Jul 17, 2026 · Updated 1 time

Summary

This study tests a web-based decision-support tool designed to help families and doctors make shared decisions about whether a child should go on chronic home ventilation. Half of the participating families use the tool, while the other half receive usual care. Researchers then measure how prepared parents feel and how well they and their doctors communicate about the decision.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
HomeVENT decision support tool (web-based decision aid)
What this could lead to
If effective, this tool could help families feel more prepared and improve communication with doctors when making difficult decisions about home ventilation for a child.
What could go wrong
This is a behavioral study, not a drug trial, so the impact is limited to decision-making support. Results may vary by family and setting.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

About 600 people

The number the study aims to enrol. It can still change while the study runs.

Started

Feb 2024

Expected to finish

Dec 2030

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: 1. English- or Spanish-speaking 2. Males and females; Age 18 and over. 3. Parent of a child facing a decision about home ventilation within 30 days. A "parent" will be defined as any self-identified primary caregiver (parents, grandparents, etc). or Physician of a child whose parents are enrolled in the study; physician must be engaged in the home ventilation decision. 4. Provision of signed and dated informed consent form (parent) or completion of oral consent (physician) 5. Stated willingness to comply with all study procedures and availability for the duration of the study 6. Access to necessary resources if choose to participate via internet or telephone Exclusion Criteria: 1. Excluding children as they cannot be legal decision-makers 2. Non-English or Non-Spanish speaking parents, as the intervention website/ videos are only available in those two languages.

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Conditions

The condition(s) this trial relates to.

childhood acute lymphoblastic leukemia Communication communication disorder Precursor Cell Lymphoblastic Leukemia-Lymphoma respiratory failure

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Communication Pediatric ALL Respiratory insufficiency

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    4 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Children's Hospital New Orleans

    RECRUITING

    New Orleans, Louisiana, 70118, United States

  • Johns Hopkins All Childrens Hospital

    RECRUITING

    Tampa, Florida, 33701, United States

  • Johns Hopkins University School of Medicine

    RECRUITING

    Baltimore, Maryland, 21287, United States

  • Seattle Childrens Hospital

    RECRUITING

    Seattle, Washington, 98145, United States

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