Digital Care Plans for Genetic Predisposition to Cancer

Overseen By Lisa Schwartz, PhD

Age: Any Age

Sex: Any

Trial Phase: Academic

Sponsor: Children's Hospital of Philadelphia

Disqualifiers: Cognitive impairment, others

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

Compensation: Varies

Number of Visits: 3

164 Participants Needed

Trial Summary

What is the purpose of this trial?

Develop and evaluate acceptability, feasibility, and preliminary efficacy of digital care plan and accompanying text message reminders for children and adolescents with a known Cancer Predisposition Syndromes (CPS).

Research Team

Suzanne MacFarland, MD

Principal Investigator

Children's Hospital of Philadelphia

Eligibility Criteria

This trial is for children and adolescents over the age of 12, along with their parents or legal guardians, who are being followed up at CHOP for a known Cancer Predisposition Syndrome diagnosed within the last three years. Participants must be able to understand and speak English without cognitive impairments that limit their ability to complete study tasks.

Inclusion Criteria

Parents must have received care at the Cancer Predisposition clinic at the Children's Hospital of Philadelphia (CHOP), or other medical institutions (does not need to be receiving follow-up care at CHOP)

I am a young person diagnosed with a genetic risk for cancer in the last 5 years.

My parents can think clearly and complete tasks without help.

Exclusion Criteria

Not meeting any of inclusion criteria

Timeline

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Intervention

Participants receive digital care plans and optional text message reminders for Cancer Predisposition Syndromes

3 months

Initial setup visit (virtual or in-person)

Follow-up

Participants are monitored for changes in anxiety, distress, and knowledge scores at 3 and 6 months

6 months

Assessments at 3 and 6 months (virtual)

Treatment Details

Interventions

• Digital Care Plans

Trial Overview The trial aims to develop and test digital care plans complemented by text message reminders. These tools are designed for young patients with Cancer Predisposition Syndromes to assess how acceptable, feasible, and effective they are in managing health care needs.

Participant Groups

Group I: Intervention: Digital Care Plans with Accompanying Text Messages Experimental Treatment 1 Intervention

Investigators will recruit families and patients diagnosed with a Cancer Predisposition Syndrome within 3 years. Participants will be provided with a digital care plan and optional accompanying text message reminders.

Who Is Running the Clinical Trial?

Children's Hospital of Philadelphia

Lead Sponsor

Trials

749

Recruited

11,400,000+

National Institutes of Health (NIH)

Collaborator

Trials

2,896

Recruited

8,053,000+

National Human Genome Research Institute (NHGRI)

Collaborator

Trials

273

Recruited

299,000+