Web Intervention for Parents of Youth With Genetic Syndromes (WINGS)

Description

The purpose of this study is to evaluate the effectiveness of an adapted, telehealth functional behavioral therapy (FBTsIDD) specifically focused on promoting appropriate communication and behavioral strategies in individuals with syndromic intellectual and developmental disorders. Participants will be asked to complete virtual study assessments at intake and then on a monthly basis for the duration of 3-6 months. In addition, participants will attend weekly or biweekly virtual intervention visits with a study therapist.

Conditions

Telomeric 22Q13 Monosomy Syndrome, Tuberous Sclerosis, Hamartoma Syndrome, Multiple, Fragile X Syndrome, Angelman Syndrome, Rett Syndrome, Chromosome 15Q, Partial Deletion, Creatine Deficiency, X-linked

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Study Overview

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Study Details

Study overview

The purpose of this study is to evaluate the effectiveness of an adapted, telehealth functional behavioral therapy (FBTsIDD) specifically focused on promoting appropriate communication and behavioral strategies in individuals with syndromic intellectual and developmental disorders. Participants will be asked to complete virtual study assessments at intake and then on a monthly basis for the duration of 3-6 months. In addition, participants will attend weekly or biweekly virtual intervention visits with a study therapist.

Promoting Prosocial Behavior in Syndromic Intellectual and Developmental Disabilities

Web Intervention for Parents of Youth With Genetic Syndromes (WINGS)

Condition
Telomeric 22Q13 Monosomy Syndrome
Intervention / Treatment

-

Contacts and Locations

Chicago

Autism Assessment Research Treatment and Services (AARTS) Center at Rush University Medical Center, Chicago, Illinois, United States, 60612

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility 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 level in moderate, severe, or profound range
  • * 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.
  • * 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)

Ages Eligible for Study

2 Years to 12 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Rush University Medical Center,

Study Record Dates

2026-12