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Reporting of Adult-Onset Genomic Results in Pediatric Patients
Study Summary
This trial will assess the psychological effects on children and their parents who receive genomic results, as well as health behaviors of parents whose children receive an adult- or pediatric-onset genomic result.
Eligibility Criteria
Inclusion Criteria
You may be eligible if you check “Yes” for the criteria belowTimeline
Treatment Details
Study Objectives
Outcome measures can provide a clearer picture of what you can expect from a treatment.Trial Design
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Who is running the clinical trial?
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- I have received genetic counseling for a condition that can be treated.You have already received genetic counseling for the specific conditions being studied in another research study.I am under 18 and part of the MyCode study.
- Group 1: Receive an adult-onset result
- Group 2: Receive a pediatric-onset result
- Group 3: Control - No result
- No Placebo-Only Group - All patients enrolled in this study will receive some form of active treatment.
- Screening: It may take up to 3 Weeks to process to see if you qualify in this trial.
- Treatment: The duration you will receive the treatment varies.
- Follow Ups: You may be asked to continue sharing information regarding the trial for 6 Months after you stop receiving the treatment.
Frequently Asked Questions
What is the desired outcome of this research endeavor?
"This research focuses on the uptake of cascade testing, and secondary outcomes include Decision Regret scale, Self-Esteem Scale, and Children's Revised Impact of Events (CRIES) measure. Baseline assessments are conducted at commencement with follow-up surveys being administered after 1 month, 6 months, and 12 months post-disclosure. The Decision Regret Scale consists of 5 items scored out of 4 points each; while the Self-Esteem Score is made up 10 items that must be combined to determine a score; CRIES features 13 measurements which when totalled can indicate PTSD levels above 30."
What is the capacity of participants for this medical experiment?
"Indeed, the information displayed on clinicaltrials.gov reveals that this research study is currently enrolling participants. The trial was first advertised on November 25th 2020 and has been recently updated as of February 15th 2022. It seeks to recruit 705 individuals located at a single site."
Is enlistment in the research still available?
"That is correct. According to information hosted on clinicaltrials.gov, this research trial was first posted in November 2020 and has been actively recruiting participants since then. The study requires 705 patients from 1 medical centre."
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