Can a video-based therapy tame tough behaviors in kids with rare genetic disorders?

NCT ID NCT06139172

Symptom relief Sponsor: Rush University Medical Center Source: ClinicalTrials.gov ↗

First seen Jun 25, 2026 · Last updated Sep 18, 2026 · Updated 4 times

Summary

This study tests a virtual behavioral therapy (Functional Behavioral Training) for children aged 2-12 with genetic syndromes like Fragile X, Angelman, or Rett syndrome who have challenging behaviors. The therapy teaches parents how to identify what triggers problem behaviors and replace them with positive communication. Over 3-6 months, researchers will track changes in overall functioning and specific problem behaviors through monthly virtual visits.

What this could mean

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

Active substance: Functional Behavioral Training (FBT)
What this could lead to: If it works, this could provide a practical, home-based therapy to help children with certain genetic syndromes communicate better and have fewer behavior problems.
What could go wrong: This is a small, early-stage study with no control group, so results may not apply broadly. The therapy requires consistent caregiver involvement, which may be challenging for some families.

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

79 people

The number who actually took part.

Started

Sep 2023

Expected to finish

Apr 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

2 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: * Age(s) 2-12 years old at time of enrollment * Existing genetic syndrome based on clinical or genetic diagnosis and confirmed by medical records * Documented diagnosis of global developmental delay (GDD) or intellectual disability (ID) * estimated ID in all ranges * Disruptive behavior challenges determined to be clinically appropriate for remote, parent-implemented coaching based on clinician determination of acuity of problem behaviors * Caregiver who is able to consent in English. * Parent/caregiver available for weekly intervention sessions * Stable psychosocial and psychiatric treatments 3 months prior to baseline visit. Exclusion Criteria: * High levels of aggression that mitigate remote or outpatient treatment as defined by clinician judgement and/or ABC Irritability scores above 20 (i.e., higher level of care needed than provided by study procedures) * Medical or psychiatric instability that may limit study participation * Meaningful change in medication or psychosocial interventions 3 months prior to baseline visit * Limitations in technology access that may hinder participation in remote trial (e.g., declining support provided by study participation)

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Conditions

The condition(s) this trial relates to.

Angelman syndrome Cowden disease Cowden syndrome 1 creatine transporter deficiency fragile X syndrome partial deletion of the long arm of chromosome 15 Phelan-McDermid syndrome Rett syndrome tuberous sclerosis tuberous sclerosis 1

As listed by the trial registrant

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

Angelman syndrome Chromosome 15q, partial deletion Creatine deficiency, X-linked Fragile X syndrome Hamartoma syndrome, multiple Rett syndrome Telomeric 22q13 monosomy syndrome Tuberous sclerosis

Contacts and locations

Locations

Autism Assessment Research Treatment and Services (AARTS) Center at Rush University Medical Center

Chicago, Illinois, 60612, United States

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