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

Launched by RUSH UNIVERSITY MEDICAL CENTER · Nov 14, 2023

Keywords

ClinConnect Summary

The WINGS clinical trial is studying a new online therapy program designed to help parents of children with certain genetic syndromes improve their children's communication and behavior. This program focuses on providing support specifically for kids who have developmental challenges due to conditions like Telomeric 22Q13 Monosomy Syndrome, Tuberous Sclerosis, and several others. The goal is to see if this telehealth approach can effectively teach parents strategies to manage their child’s behaviors and support their development.

To participate, children must be between 2 to 12 years old and have a diagnosed genetic syndrome along with significant developmental delays or intellectual disabilities. Parents or caregivers who can communicate in English and are available for weekly online sessions can join. Participants will complete virtual assessments and meet regularly with a therapist for guidance over a period of 3 to 6 months. This trial is currently looking for volunteers, and it's important to note that families with serious behavior issues or unstable medical conditions may not be eligible.

Gender

ALL

Eligibility criteria

• 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)