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New behavioral therapy aims to tame tantrums in rare genetic disorder

NCT ID NCT05829668

Symptom relief Sponsor: Hugo W. Moser Research Institute at Kennedy Krieger, Inc. 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 27, 2026 · Updated 1 time

Summary

This study tests a behavioral therapy for children with Cornelia de Lange syndrome (CdLS) who have problem behaviors like aggression or self-injury. Researchers will identify what triggers these behaviors and then train parents to use a tailored treatment. The goal is to reduce problem behaviors by at least 80%. The study involves 20 children and their families, with some serving as a comparison group.

What this could mean

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

Active substance
ABA-based functional analysis and behavioral treatment
What this could lead to
If successful, this could provide an effective, non-drug way to reduce problem behaviors like aggression and tantrums in children with Cornelia de Lange syndrome.
What could go wrong
This is a small, early-stage study with only 20 participants, so results may not apply to all children. The treatment requires intensive clinic visits and parent training, which may be hard to sustain.

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 20 people

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

Started

Aug 2023

Expected to finish

Dec 2026

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 15 years

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 for treatment group: 1. Child with CdLS and problem behavior: 1. clinical diagnosis of CdLS confirmed; 2. age 3 to 15 years; 3. is English-speaking; 4. exhibits SIB, aggression, and/or disruptive behavior; and 5. is able to participate in several hours of assessment/treatment. 2. Parent of child with CdLS is English-speaking and is willing to: 1. attend 2 full-day and one half-day clinic visits; 2. complete and return study measures; and 3. implement a behavior plan. Inclusion Criteria for control group: 1. Child with CdLS without problem behavior: 1. clinical diagnosis of CdLS confirmed; 2. is English-speaking 3. age 3 to 15 years; and 4. child's age and adaptive functioning level matches that of a child in the treatment group 2. Parent of child with CdLS is English-speaking and willing to: 1. complete and return study measures. Exclusion Criteria for treatment group: 1. Child with CdLS: 1. does not exhibit SIB, aggression, or disruptive behavior; 2. child is younger than 3 years or older than 15 years; 3. is not English-speaking; 4. has severe SIB that produces significant tissue damage or requires protective equipment; 5. has uncontrolled seizures; or 6. has medical conditions or requires time-intensive medical care that limits attendance or participation. 2. Parent of child with CdLS is not English-speaking or is not willing to complete study procedures. Exclusion Criteria for the control group: 1. Child with CdLS: 1. exhibits SIB, aggression, or disruptive behavior; 2. is younger than 3 years or older than 15 years; 3. is not English-speaking; 4. age and adaptive functioning level do not match that of a child in the treatment group. 2. Parent of child with CdLS is not English-speaking or willing to complete study procedures.

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Conditions

The condition(s) this trial relates to.

Cornelia de Lange syndrome De Lange Syndrome Problem Behavior

As listed by the trial registrant

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

Cornelia de Lange syndrome

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

  • Kennedy Krieger Institute

    RECRUITING

    Baltimore, Maryland, 21205, United States

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