What side effects are associated with this type of intervention?

Genetic testing and related treatments, such as paired tumor/normal testing, can have several side effects. Common side effects include psychological impacts like anxiety, stress, and emotional distress due to the results. Physical side effects are generally minimal but may include discomfort or bruising at the site of blood draw. In some cases, there may be implications for insurance and employment based on genetic information. It is important to discuss these potential side effects with a healthcare provider to fully understand the risks and benefits.

What prior FDA approvals exist?

The FDA has approved several treatments for genetic disorders. For Duchenne Muscular Dystrophy (DMD), ataluren received conditional approval by the European Commission for treating DMD caused by a nonsense mutation in the dystrophin gene, although it is not approved in the United States. For Prader-Willi Syndrome (PWS), there are no specific FDA-approved drugs mentioned, but management often involves addressing symptoms such as hypotonia and obesity. These treatments are part of ongoing efforts to manage genetic disorders through targeted therapies.

What other types of research exist?

Promising alternatives to informational videos for genetic disorder patients include: 1) Interactive mobile applications that provide personalized information and support, 2) Virtual reality (VR) experiences that simulate genetic counseling sessions, 3) Telehealth platforms offering real-time consultations with genetic counselors, and 4) Augmented reality (AR) tools that visualize genetic information in an engaging manner.

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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

No Placebo-Only Group

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 weeks3 visits

Treatment ~ Varies

Follow Up ~ up to 4 weeks after testing

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

Awards & Highlights

No Placebo-Only Group

All patients enrolled in this study will receive some form of active treatment.

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.

Do I qualify?Apply below to find out

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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