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

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

Recruiting
2-12 years
All
Phase N/A

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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.

Eligibility

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)

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

NCT06139172

Rush University Medical Center

13 September 2025

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