Educational Video for Childhood Cancer

Overseen By Suzanne MacFarland, MD

Age: Any Age

Sex: Any

Trial Phase: Academic

Sponsor: Children's Hospital of Philadelphia

Disqualifiers: Not meeting inclusion criteria

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: Unknown

359 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

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.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

How does the Educational Video for Genetic Testing treatment differ from other treatments for childhood cancer?

The Educational Video for Genetic Testing is unique because it uses video-based education to improve understanding of genetic testing among children with cancer and their families, which can enhance decision-making and reduce anxiety compared to traditional written materials. ^{1 2 3 4 5}

What data supports the effectiveness of the treatment Educational Video for Genetic Testing?

Research shows that educational videos can significantly improve understanding and knowledge about complex medical topics, such as genetic testing and fertility preservation, among patients and their families. These videos help clarify concepts, reduce hesitancy, and enhance decision-making, making them an effective tool for patient education. ^{1 2 4 6 7}

Who Is on the Research Team?

Suzanne MacFarland, MD

Principal Investigator

Children's Hospital of Philadelphia

Are You a Good Fit for This Trial?

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.

Inclusion Criteria

Ages 12+

Adolescent/Young Adult (AYA) probands: Child proband receiving germline testing in the Cancer Center at CHOP

Appropriate to approach per oncology team

Exclusion Criteria

You do not meet any of the requirements to be included in the study.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention Year 1

Families receive the current standard-of-care approach to tumor-normal genetic testing with provider-based education

1 year

Intervention Year 2

Families receive the updated standard-of-care approach with provider-based education and an educational video

1 year

Follow-up

Participants are monitored for knowledge score and acceptability of the video intervention

6 months

What Are the Treatments Tested in This Trial?

Interventions

• Educational Video for Genetic Testing

Trial Overview 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.

How Is the Trial Designed?

Group I: With Video Experimental Treatment 1 Intervention

In year 2, investigators 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 Video Active Control 1 Intervention

In year 1, investigators will recruit families of patients receiving the current standard-of-care approach to tumor-normal genetic testing with provider based education.

Who Is Running the Clinical Trial?

Children's Hospital of Philadelphia

Lead Sponsor

Trials

749

Recruited

11,400,000+

National Human Genome Research Institute (NHGRI)

Collaborator

Trials

273

Recruited

299,000+

National Institutes of Health (NIH)

Collaborator

Trials

2,896

Recruited

8,053,000+

Citations

1. Netherlands pubmed.ncbi.nlm.nih.gov

Developing video education materials for the return of genomic test results to parents and adolescents. [2022]

2. United States pubmed.ncbi.nlm.nih.gov

Efficacy of Video-based Education in Improving Understanding of Pediatric Fertility Preservation. [2023]

3. United States pubmed.ncbi.nlm.nih.gov

Video-assisted genetic counseling in patients with ovarian, fallopian and peritoneal carcinoma. [2023]

4. United States pubmed.ncbi.nlm.nih.gov

Improving Patient Knowledge of Aneuploidy Testing Using an Educational Video: A Randomized Controlled Trial. [2021]

5. England pubmed.ncbi.nlm.nih.gov

The Impact of an Educational Video in Arabic Language on Patients' Knowledge and Attitudes Towards Genetic Testing for Cancer Therapy. [2023]

6. United States pubmed.ncbi.nlm.nih.gov

Increasing genomic literacy among adolescents. [2022]

7. Germany pubmed.ncbi.nlm.nih.gov

YouTube as an information source on BRCA mutations: implications for patients and professionals. [2022]