RecruitingNot ApplicableNCT06139172

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

Promoting Prosocial Behavior in Syndromic Intellectual and Developmental Disabilities

Sponsor

Rush University Medical Center

Enrollment

92 participants

Start Date

Sep 15, 2023

Study Type

INTERVENTIONAL

Conditions

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

Summary

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.

Eligibility

Min Age: 2 YearsMax Age: 12 Years

Plain Language Summary

Simplified for easier understanding

This study tests a web-based coaching program called WINGS designed to help parents of children with genetic syndromes and intellectual disabilities manage challenging behaviors at home. A trained therapist coaches parents remotely on behavioral strategies. **You may be eligible if...** - Your child is between 2 and 12 years old - Your child has a confirmed genetic syndrome and a diagnosis of global developmental delay or intellectual disability - Your child has behavior challenges that a clinician has determined are appropriate for remote, parent-led coaching - You as a parent or caregiver speak English and can attend weekly sessions - Your family situation is currently stable **You may NOT be eligible if...** - Your child does not have a confirmed genetic syndrome or developmental diagnosis - The behavior challenges are too severe or urgent for remote management - You are unable to communicate in English - You cannot commit to weekly sessions Talk to your doctor to see if this trial is right for you.

This summary was AI-generated to explain the trial in plain language. It is not medical advice. Always discuss eligibility with your doctor before enrolling in a clinical trial.

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Interventions

BEHAVIORALFunctional Behavioral Training (FBT)

Function-based treatment (FBT) is a term for behavioral intervention approaches that use objective and systematic data collection to identify the cause of challenging behavior and teach a more prosocial replacement behavior. FBTslDD incorporates standard elements of FBT protocols with adaptations made specifically to support application to the syndromic IDD population. FBTslDD will include the following steps: (1) Syndromic IDD screening; (2) Stimulus preference assessment; (3) Indirect and descriptive assessments; (4) Screening for automatic function; (5) Functional analysis (FA); and (6) FBT intervention phase. If steps 1 - 5 determine a participant's challenging behavior serves a social function, Functional Communication Training (FCT) will be administered. If steps 1 - 5 determine a participant's challenging behavior serves an automatic function Competing Stimulus Treatment (CST) will be administered.

OTHERPositive Parenting Strategies-Treatment as Usual

Using the Planned Adaptation approach, to identify proactive adaptations seeking to improve the fit of FBTsIDD with the unique needs of the syndromic IDD population. Triangulating mixed methods data from systematic video observations, questionnaires, and qualitative interviews, then the Framework for Reporting Adaptations and Modifications-Expanded24 (FRAME) will be used to develop a rich understanding of these and any additional adaptations made to the intervention when delivered by non-specialist providers within medical hubs serving syndromic IDD populations.