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SurvivorLink for Childhood Cancer
N/A
Recruiting
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
Timeline
Screening 3 weeks
Treatment Varies
Follow Up month 3, month 12
Awards & highlights
Study 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.Check my eligibility
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.See study design
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.
Timeline
Screening ~ 3 weeks3 visits
Treatment ~ Varies
Follow Up ~ month 3, month 12
Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~month 3, month 12
Treatment Details
Study Objectives
Outcome measures can provide a clearer picture of what you can expect from a treatment.Primary outcome measures
Completion of follow-up survivorship visit
Completion of recommended screening tests
Secondary outcome measures
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 moreTrial 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.
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Who is running the clinical trial?
Emory UniversityLead Sponsor
1,640 Previous Clinical Trials
2,558,896 Total Patients Enrolled
National Cancer Institute (NCI)NIH
13,666 Previous Clinical Trials
40,924,229 Total Patients Enrolled
Ann Mertens, PhDPrincipal InvestigatorEmory University
Media Library
Eligibility Criteria:
This trial includes the following eligibility criteria:- I am caring for a child or young adult with a terminal illness.I am a caregiver of a survivor under 18 or a survivor aged 18-22 and I speak English or Spanish.I give permission to access SHP records on SurvivorLink for those under 23.My child or I am a cancer survivor who finished treatment within the last year.I can access the internet with a computer or smartphone.My clinic offers a specific plan for cancer survivors.I allow the use of clinical data for research on service use.
Research Study Groups:
This trial has the following groups:- Group 1: SurvivorLink
- Group 2: Usual care
Awards:
This trial has 1 awards, including:- No Placebo-Only Group - All patients enrolled in this study will receive some form of active treatment.
Timeline:
This trial has the following timeline:- Screening: It may take up to 3 Weeks to process to see if you qualify in this trial.
- Treatment: The duration you will receive the treatment varies.
- Follow Ups: You may be asked to continue sharing information regarding the trial for 6 Months after you stop receiving the treatment.
Frequently Asked Questions
These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.
What do researchers hope to discover through this clinical trial?
"The primary metric by which this study will assess success is the number of patients who complete a follow-up survivorship visit within 12 months. Additionally, the study will track changes in self-efficacy for managing chronic disease, patient-reported outcome measurement, and patient activation measure."
Answered by AI
Are there a few different places in America where this test is being done?
"Currently, 12 clinical trial sites are enrolling patients for this study. If you are considering participating, know that the locations of these sites include Hershey, Saint Louis, Syracuse and 12 other cities. To limit participant burden, it might be best to select the location closest to you."
Answered by AI
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