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

Trial statusRecruiting
Trial phaseNot applicable
Trial typeInterventional
Biological sexAll
Age2-12
SponsorRush University Medical Center

About this trial

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 criteria

Qualifiers

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

Disqualifiers

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)

Trial design

Treatments tested in this trial

  • Functional Behavioral Training (FBT)
  • Positive Parenting Strategies-Treatment as Usual

Treatment groups

92 Participants
are divided into 2 treatment groups

Sponsors and collaborators

Rush University Medical Center

Lead sponsor

Emory University

Collaborator