Educational Video for Genetic Disease

Phase-Based Progress Estimates
Children's Hospital of Philadelphia, Philadelphia, PA
Genetic Disease+2 More
Educational Video - Other
Any Age
All Sexes
What conditions do you have?

Study Summary

Develop and evaluate the acceptability, feasibility, and preliminary efficacy of an informational video on paired tumor/normal testing for children and adolescents with a new diagnosis of cancer, tumors or other diagnosis.

Eligible Conditions

  • Genetic Disease
  • Malignancies

Treatment Effectiveness

Effectiveness Progress

1 of 3

Study Objectives

1 Primary · 4 Secondary · Reporting Duration: up to 4 weeks after testing

Month 6
Knowledge Score - After Results
Month 6
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.
Month 6
Knowledge Score - all caregivers and probands
Week 4
Knowledge Score - Before Results

Trial Safety

Safety Progress

1 of 3

Trial Design

2 Treatment Groups

Without Video
1 of 2
With Video
1 of 2
Active Control
Experimental Treatment

266 Total Participants · 2 Treatment Groups

Primary Treatment: Educational Video · No Placebo Group · N/A

With Video
Experimental Group · 1 Intervention: Educational Video · Intervention Types: Other
Without VideoNoIntervention Group · 1 Intervention: Without Video · Intervention Types:

Trial Logistics

Trial Timeline

Approximate Timeline
Screening: ~3 weeks
Treatment: Varies
Reporting: up to 4 weeks after testing
Closest Location: Children's Hospital of Philadelphia · Philadelphia, PA
Photo of Philadelphia 1Photo of Philadelphia 2Photo of Philadelphia 3
2011First Recorded Clinical Trial
4 TrialsResearching Genetic Disease
659 CompletedClinical Trials

Who is running the clinical trial?

National Human Genome Research Institute (NHGRI)NIH
249 Previous Clinical Trials
277,229 Total Patients Enrolled
11 Trials studying Genetic Disease
24,323 Patients Enrolled for Genetic Disease
National Institutes of Health (NIH)NIH
2,389 Previous Clinical Trials
24,521,275 Total Patients Enrolled
Children's Hospital of PhiladelphiaLead Sponsor
640 Previous Clinical Trials
7,846,618 Total Patients Enrolled
2 Trials studying Genetic Disease
3,018 Patients Enrolled for Genetic Disease
Suzanne MacFarland, MDPrincipal InvestigatorChildren's Hospital of Philadelphia
1 Previous Clinical Trials
300 Total Patients Enrolled

Eligibility Criteria

Age Any Age · All Participants · 9 Total Inclusion Criteria

Mark “yes” if the following statements are true for you:
You are a parent or legal guardian of a patient with a new diagnosis of cancer, tumor, or other diagnosis referred for tumor/normal sequencing (proband) in the Cancer Center at the Children's Hospital of Philadelphia (CHOP).
You are able to be approached within 1-4 weeks of tumor/normal sequencing.
You are a child of a cancer patient receiving germline testing in the Cancer Center at CHOP.

About The Reviewer

Michael Gill preview

Michael Gill - B. Sc.

First Published: October 9th, 2021

Last Reviewed: August 12th, 2022

Michael Gill holds a Bachelors of Science in Integrated Science and Mathematics from McMaster University. During his degree he devoted considerable time modeling the pharmacodynamics of promising drug candidates. Since then, he has leveraged this knowledge of the investigational new drug ecosystem to help his father navigate clinical trials for multiple myeloma, an experience which prompted him to co-found Power Life Sciences: a company that helps patients access randomized controlled trials.