Educational Video for Childhood Cancer

Overseen by Suzanne MacFarland, MD

Age: Any Age

Sex: Any

Travel: May Be Covered

Time Reimbursement: Varies

Trial Phase: Academic

Waitlist Available

Sponsor: Children's Hospital of Philadelphia

No Placebo Group

Trial Summary

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.

Research Team

Suzanne MacFarland, MD

Principal Investigator

Children's Hospital of Philadelphia

Eligibility Criteria

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.

Treatment Details

Interventions

• Educational Video for Genetic Testing (Behavioural Intervention)

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.

Participant Groups

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+

Joseph W. St. Geme III

Children's Hospital of Philadelphia

Chief Medical Officer since 2021

MD, PhD, MPH

Madeline Bell

Children's Hospital of Philadelphia

Chief Executive Officer since 2015

BSc in Nursing from Villanova University, MSc in Organizational Dynamics from the University of Pennsylvania

National Human Genome Research Institute (NHGRI)

Collaborator

Trials

273

Recruited

299,000+

Eric Green

National Human Genome Research Institute (NHGRI)

Chief Executive Officer since 2009

MD, PhD

Vence L. Bonham Jr.

National Human Genome Research Institute (NHGRI)

Chief Medical Officer since 2021

JD

National Institutes of Health (NIH)

Collaborator

Trials

2,896

Recruited

8,053,000+

Dr. Jeanne Marrazzo

National Institutes of Health (NIH)

Chief Medical Officer

MD from University of California, Los Angeles

Dr. Jay Bhattacharya

National Institutes of Health (NIH)

Chief Executive Officer

MD, PhD from Stanford University