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Dragonfly study launches to map rare genetic syndrome

NCT ID NCT07167732

Knowledge-focused Sponsor: University Medical Centre Ljubljana 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 26, 2026 · Last updated Jun 26, 2026

Summary

The Dragonfly study is an international observational project tracking the development of 250 children and adults with CTNNB1 neurodevelopmental syndrome. Researchers will collect medical history, perform neurological exams, and use questionnaires to understand how symptoms and abilities change over time. This information aims to improve patient care and help design future clinical trials.

What this could mean

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

What this could lead to
If successful, this study could provide crucial data to design better treatments and improve care standards for CTNNB1 syndrome.
What could go wrong
This is an observational study, not a treatment trial. It will not directly test any therapy, and results may take years to impact patient care.

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.

Participants

About 250 people

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

Started

Jun 2024

Expected to finish

Jan 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.

Who is studied

The study will enroll individuals with a genetically confirmed pathogenic variant in the CTNNB1 gene consistent with a diagnosis of CTNNB1 neurodevelopmental syndrome. Each participant must have at least one parent or legal guardian available to support participation in the study. Families with more than one affected individual are eligible, and multiple participants from the same family may be enrolled.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

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: * Clinically and genetically confirmed diagnosis of CTNNB1 syndrome. * Age 0-99 years. * Written informed consent/online consent to participate in study from a primary carer (parent or legal guardian). Exclusion Criteria: * Child/adult with CTNNB1 syndrome participating in a clinical trial of a potential treatment for the syndrome.

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Conditions

The condition(s) this trial relates to.

Autism Spectrum Disorder CTNNB1-related neurodevelopmental disorder and/or vitreoretinopathy learning disability severe intellectual disability-progressive spastic diplegia syndrome

As listed by the trial registrant

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

CTNNB1 neurodevelopmental syndrome

How to take part

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

  1. The places running it

    2 sites in 2 countries. 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

  • Sydney Children's Hospital

    NOT_YET_RECRUITING

    Sydney, Australia

  • University Medical Centre Ljubljana

    RECRUITING

    Ljubljana, 1000, Slovenia

More trials for these conditions

Other studies related to the condition(s) this trial covers.