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Behavioural Intervention

Educational Video for Childhood Cancer

N/A
Recruiting
Led By Suzanne MacFarland, MD
Research Sponsored by Children's Hospital of Philadelphia
Eligibility Criteria Checklist
Specific guidelines that determine who can or cannot participate in a clinical trial
Must have
Timeline
Screening 3 weeks
Treatment Varies
Follow Up up to 4 weeks after testing
Awards & highlights

Summary

This trial aims to develop and test an informational video about genetic testing for children and adolescents newly diagnosed with cancer or tumors. The video explains why both cancer tissue and normal tissue are tested, helping families understand the process and its benefits. By providing this information, the trial seeks to support families and improve their experience during a challenging time.

Who is the study for?
This trial is for children and adolescents aged 12 or older with a new diagnosis of cancer, tumors, or genetic disorders. Participants must be able to understand and speak English fluently without cognitive impairments that limit comprehension. It's also open to parents/legal guardians of these patients at the Children's Hospital of Philadelphia.
What is being tested?
The study is testing an educational video designed to inform about paired tumor/normal genetic testing in young patients with cancer or other related diagnoses. The goal is to assess how acceptable, feasible, and effective this video is as a resource.
What are the potential side effects?
Since this trial involves an educational video rather than a medical treatment, there are no direct physical side effects associated with it. However, participants may experience emotional or psychological responses based on the content.

Timeline

Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~up to 4 weeks after testing
This trial's timeline: 3 weeks for screening, Varies for treatment, and up to 4 weeks after testing for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.
Primary study objectives
Knowledge Score - Before Results
Secondary study objectives
Acceptability of use of an informational video on paired tumor/normal testing for participants with a new cancer or other diagnosis
Feasibility of an informational video on paired tumor/normal testing for children and adolescents with a new cancer diagnosis.
Knowledge Score - After Results
+1 more

Trial Design

2Treatment groups
Experimental Treatment
Active Control
Group I: With VideoExperimental Treatment1 Intervention
In year 2, we will recruit families of patients receiving the updated standard-of-care approach to tumor-normal genetic testing with provider based education and an educational video.
Group II: Without VideoActive Control1 Intervention
In year 1, we will recruit families of patients receiving the current standard-of-care approach to tumor-normal genetic testing with provider based education.

Research Highlights

Information in this section is not a recommendation. We encourage patients to speak with their healthcare team when evaluating any treatment decision.
Mechanism Of Action
Side Effect Profile
Prior Approvals
Other Research
Common treatments for genetic disorders often include gene therapy, enzyme replacement therapy, and pharmacological interventions. Gene therapy works by introducing, removing, or altering genetic material within a patient's cells to correct defective genes. Enzyme replacement therapy involves supplementing the deficient or absent enzymes in patients, thereby alleviating symptoms. Pharmacological interventions target specific pathways or proteins affected by the genetic mutation to mitigate disease effects. Understanding these mechanisms is crucial for patients as it empowers them with knowledge about how their treatments work, potentially improving adherence and outcomes. Educational interventions, like the informational video on genetic testing, play a vital role in enhancing patient comprehension and engagement in their treatment plans.
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Find a Location

Who is running the clinical trial?

National Human Genome Research Institute (NHGRI)NIH
266 Previous Clinical Trials
292,516 Total Patients Enrolled
Children's Hospital of PhiladelphiaLead Sponsor
721 Previous Clinical Trials
8,603,971 Total Patients Enrolled
National Institutes of Health (NIH)NIH
2,765 Previous Clinical Trials
8,133,155 Total Patients Enrolled

Media Library

Educational Video for Genetic Testing (Behavioural Intervention) Clinical Trial Eligibility Overview. Trial Name: NCT05472714 — N/A
Genetic Disorder Research Study Groups: With Video, Without Video
Genetic Disorder Clinical Trial 2023: Educational Video for Genetic Testing Highlights & Side Effects. Trial Name: NCT05472714 — N/A
Educational Video for Genetic Testing (Behavioural Intervention) 2023 Treatment Timeline for Medical Study. Trial Name: NCT05472714 — N/A
~89 spots leftby Sep 2025