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IPad app could give voice to kids with rare genetic disorders

NCT ID NCT07039084

Symptom relief Sponsor: Murdoch Childrens Research Institute 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 25, 2026 · Last updated Jun 27, 2026 · Updated 2 times

Summary

This trial tests whether an iPad loaded with a speech-generating app can help children aged 3-12 with rare genetic conditions who have very limited speech. Each of the 38 participants will use the device during therapy sessions and also receive usual care, in a crossover design. The goal is to see if the device increases how often they communicate meaningful messages.

What this could mean

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

Active substance
iPad with speech-generating communication app
What this could lead to
If it works, this could provide a practical communication tool for children with rare genetic conditions who have limited speech.
What could go wrong
This is a small early-stage trial (38 participants) testing a device, not a cure. Results may not apply to all children, and the device may not improve communication for everyone.

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 38 people

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

Started

Nov 2025

Expected to finish

May 2027

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

3 to 12 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

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: * Is between the ages of 3 and 12 years, inclusive, at the time of enrolment * Has a diagnosis of a rare genetic disorder * Passes a visual-motor screening test, therefore being able to tap on an iPad spontaneously or by imitation and has adequate hearing * Considered "minimally verbal" with less than 50 spontaneous words (or gestalts) at baseline assessments, confirmed with the LVIS. * Is not currently using a speech-generating device with proficiency (i.e. using the device as a main mode of communication on a daily basis). * Is English-speaking or consents to therapy being conducted in English (parents will need to be able to complete the parent-reported measures in English) Exclusion Criteria: * Has an additional or dual genetic variation (as this is likely to cause multiple complications and increase variability), * Is extremely ill or has progressed into a later stage of their disease (i.e. child has clinically significant loss of vision, hearing, fine motor skills, or is unable to adequately attend sessions due to illness), * This is to ensure treatment is beneficial, reduce harm and reduce attrition rates. * Lives outside of the state of Victoria (making it difficult for in-person appointments) * Inability or unwillingness of participant or legally acceptable representative to give written informed consent.

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Conditions

The condition(s) this trial relates to.

childhood-onset dementia hereditary disease Nonverbal Communication

As listed by the trial registrant

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

Augmentative and alternative communication Childhood dementia Genetic disease Nonverbal communication Rare genetic disease Rare genetic disorders

How to take part

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

  1. The places running it

    1 site. 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

  • Murdoch Children's Research Institute

    RECRUITING

    Melbourne, Victoria, Australia

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