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Web Intervention for Parents of Youth with Genetic Syndromes (WINGS)
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OUR RESEARCH
What is WINGS (Web Intervention for Parents of Youth with Genetic Syndromes)?
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The WINGS study is a challenging behavior study with the purpose of testing telehealth interventions and providing behavioral support and strategies to parents of children with intellectual disabilities.
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What is the purpose of the study?The purpose of this study is to evaluate the effectiveness of two telehealth treatments: An adapted, telehealth functional behavioral therapy (FBTsIDD). An evidence-based positive parenting intervention (PPT) commonly used to help parents implement proactive and positive behavioral strategies in the home. Study participants will be randomly selected (like flipping a coin) to receive either (1) FBTsIDD treatment or (2) positive-parenting treatment. Participants will be told which group they are in, and they will have an equal chance of being selected for either group.
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Who can join the study?To be eligible to participate, children and families must meet the following criteria: Children aged 2-12 years at the time of enrollment. Children with an existing genetic syndrome, diagnosed clinically and confirmed by medical records (including Phelan McDermid Syndrome (PMS), Fragile X Syndrome (FXS), Angelman Syndrome, tuberous sclerosis complex (TSC), PTEN). Children with a documented diagnosis of global developmental delay (GDD) or intellectual disability (ID). Children with an estimated ID level in the moderate, severe, or profound range. Children exhibiting disruptive behavior challenges, deemed clinically appropriate for remote, parent-implemented coaching (based on the clinician's determination of the acuity of problem behaviors). Parent/caregiver able to provide consent in English. Parent/caregiver available for weekly intervention sessions. Stable psychosocial and psychiatric treatments for the 3 months preceding the first visit
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Who is not eligible to participate?To be eligible, children and families must not: Have high levels of aggression that hinder remote or outpatient treatment (as determined by clinician judgment). Have medical or psychiatric instability that may limit participation in the study. Have a parent/caregiver with limitations in technology access that may impede participation in telehealth interventions. Have experienced meaningful changes in medication or psychosocial interventions in the 3 months prior to the baseline visit.
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What activities will participants engage in during the study?The first step in the study is to engage in the screening process, during which we will review the consent document and conduct further evaluations to determine if this study is a good fit for your child and family. The screening process includes completing a Demographics and Family History Form on your own and participating in approximately 1-2 calls with the study team. It is expected to take most families about 1-2 weeks to complete this phase. If, after the screening process, it is determined that your child is eligible, you will proceed to the baseline assessment phase. This involves completing several more forms independently and participating in parent interviews with the study team. The baseline assessments are expected to take about 1-2 weeks to complete, after which you will be randomized to one of the two different intervention groups. The intervention phase will require you to meet with a therapist at least once a week through telehealth visits. The exact number of meetings may vary depending on what you are learning and how your child is progressing. Additional sessions or support will be provided as needed. What is important is that you can commit to participating in 1 to 2 hours of intervention at a consistent time each week for a minimum of 16 weeks. During this period, you will also be asked to complete forms independently and meet with the study team for about 2 hours once per month to conduct study assessments and parent interviews. Finally, after 6 months of the intervention, you will complete the final round of study assessments with the research team. This will involve completing forms independently and participating in parent interviews with the study team.
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What is the expected duration of the study?The study may last up to 6 months.
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Where and when is the study happening?This research study will be conducted entirely through a telehealth intervention. Meaning we will use technology, such as video calls, phone calls, or online platforms, to complete study activities remotely. It's important that parents/caregiviers have good and dependable technology. This helps make sure everything goes smoothly
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Will participants receive compensation for their involvement in the study?Depending on the completed study visits, participants will be compensated for up to $165.00.
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I need a device for remote telehealth sessions. What support will be available to help me set it up for the virtual sessions, and can I get assistance with using my own device if I prefer that?Yes, we understand that families may prefer using their own technology, and that's perfectly fine. When needed, we will provide a study Technology Kit, complete with a detailed guide and instructional video. Our research staff will assistin setting up the technology, conduct a practice run, and guide families in selecting an appropriate locationfor study assessments. Our goal is to ensure functional technology and help families feel prepared for the virtual sessions.


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