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

NARecruitingINTERVENTIONAL
Enrollment

92

Participants

Timeline

Start Date

September 15, 2023

Primary Completion Date

December 31, 2025

Study Completion Date

December 31, 2026

Conditions
Telomeric 22Q13 Monosomy SyndromeTuberous SclerosisHamartoma Syndrome, MultipleFragile X SyndromeAngelman SyndromeRett SyndromeChromosome 15Q, Partial DeletionCreatine Deficiency, X-linked
Interventions
BEHAVIORAL

Functional 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.

OTHER

Positive 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.

Trial Locations (1)

60612

RECRUITING

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

All Listed Sponsors
collaborator

Emory University

OTHER

lead

Rush University Medical Center

OTHER