← Back to Search

SurvivorLink for Childhood Cancer

N/A

Waitlist Available

Led By Ann Mertens, PhD

Research Sponsored by Emory University

Eligibility Criteria Checklist

Specific guidelines that determine who can or cannot participate in a clinical trial

Must have

Must not have

For Caregivers of Survivors under 18 Years of Age and for Survivors Aged 18-22: survivor has a terminal illness

Timeline

Screening 3 weeks

Treatment Varies

Follow Up month 3, month 12

Awards & highlights

No Placebo-Only Group

Summary

This trial will test the impact of an electronic personal health record and education system, SurvivorLink, on pediatric cancer patients' one year follow-up visits and completion of screening tests.

Who is the study for?

This trial is for pediatric cancer survivors who finished treatment within the past year. Participants must speak English or Spanish, have internet access, and agree to share their clinical data and survivor healthcare plan (SHP) records. Clinics should see over 100 such survivors annually, have a dedicated survivorship clinic, and be willing to partner with Emory University.

What is being tested?

SurvivorLink, an electronic personal health record system designed for pediatric cancer survivors and their caregivers, is being tested. The study aims to see if SurvivorLink improves follow-up care visits, screening test completion rates, caregiver engagement, quality of life measures, and self-efficacy in managing chronic conditions.

What are the potential side effects?

Since SurvivorLink is an electronic health record tool rather than a medication or medical procedure, it does not have traditional side effects. However participants may experience issues related to privacy concerns or stress from managing health information online.

Eligibility Criteria

Exclusion Criteria

You may be eligible for the trial if you check “No” for criteria below:

Select...

I am caring for a child or young adult with a terminal illness.

Timeline

Screening ~ 3 weeks3 visits

Treatment ~ Varies

Follow Up ~ month 3, month 12

Screening ~ 3 weeks

Treatment ~ Varies

Follow Up ~month 3, month 12

This trial's timeline: 3 weeks for screening, Varies for treatment, and month 3, month 12 for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.

Primary study objectives

Completion of follow-up survivorship visit

Completion of recommended screening tests

Secondary study objectives

Change in Patient Activation Measure (PAM) score

Change in Patient-Reported Outcome Measurement Information System (PROMIS) score

Change in Pediatric Quality of Life (PedsQL) Health Care Satisfaction Hematology/Oncology Module score

+5 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: SurvivorLinkExperimental Treatment1 Intervention

Participants receiving treatment at a pediatric cancer survivor clinic randomized to this study arm will receive education on how to use SurvivorLink, late effects of treatment, and survivorship care through the system.

Group II: Usual careActive Control1 Intervention

Participants receiving treatment at a pediatric cancer survivor clinic randomized to the usual care study arm will receive the SurvivorLink intervention beginning at Month 12.

0 / 1Eligibility criteria met