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

StatusActive, Not Recruiting
PhaseNot applicable
Started
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Record History

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  1. Final enrollment: 79 participants (planned 92)
    • Study completion pushed from Dec 2026 to Apr 2027
    • Eligibility criteria expanded, about 12 words
    • Secondary endpoints: details revised at 3 of 3 entries
  2. Trial status changed: Recruiting → Active, Not Recruiting
    • Site details revised
    v5
  3. Primary completion date: Dec 2025 to Dec 2026v4
  4. Eligibility criteria shortened, about 4 wordsv3
  5. Primary endpoint revisedv2 Show 4 more changesShow less
    • Trial status: Enrolling by Invitation to Recruiting
    • Secondary endpoints revised (3)
    • Site details revised
    • Study title expanded, about 1 word
  6. Study First Submitted
  • Stopped: an ongoing trial was terminated, suspended or withdrawn.
  • Notable: the trial’s plan changed such as a big move in its timeline or size, a new primary endpoint, sponsor or phase, or recruiting opened or resumed.
  • Minor: routine progress and housekeeping, such as sites added or enrollment closed.
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.
Trial Details
NCT Number NCT06139172
Lead Sponsor Rush University Medical Center
Collaborators: Emory University
Conditions
(from sponsor)		 Telomeric 22Q13 Monosomy Syndrome, Tuberous Sclerosis, Hamartoma Syndrome, Multiple, Fragile X Syndrome, Angelman Syndrome, Rett Syndrome, Chromosome 15Q, Partial Deletion, Creatine Deficiency, X-linked
Related terms Angelman Syndrome, Chromosome 15q, partial deletion, Creatine deficiency, X-linked, Fragile X Syndrome, Hamartoma Syndrome, Multiple, Rett Syndrome, Telomeric 22q13 Monosomy Syndrome, Tuberous Sclerosis
Enrollment 79 participants
Start Date
Primary Completion (estimated)
Study Completion (estimated)
Updated on ClinicalTrials.gov