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NCT03543852Completed

SurvivorLink: Scalability of an Electronic Personal Health Record

SurvivorLink: Scalability of an Electronic Personal Health Record for Cancer Survivors and Caregivers at Pediatric Cancer Centers

Source: ClinicalTrials.gov · Last updated 28 Oct 2026

Brief summary (registry, in English)

Previous research suggests that children and adolescents with cancer are at heightened risk of late effects that can occur months or years after cancer treatment, yet little is known about programs that increase their return for follow-up cancer care and late effects surveillance. This study will evaluate the impact of an electronic personal health record and education system, SurvivorLink, for pediatric cancer survivors and their caregivers. The researchers will develop a standardized intervention and training for the SurvivorLink trial, followed by conducting a Hybrid Type 1 effectiveness-implementation, clustered randomized, waitlist control trial to evaluate the impact of SurvivorLink on pediatric cancer patients' one year follow-up visits and completion of screening tests. The study will also assess the impact of SurvivorLink on caregiver's patient activation, survivor's and caregiver's quality of life, and self-efficacy to manage a chronic condition. This study will provide the evidence base about the effects of the system to improve follow-up care for children and adolescents with cancer and best practices for implementation for pediatric cancer centers.

Status (registry)
Completed
Study type
Interventional
Enrollment
542 (actual)
First submitted
21 May 2018
Start date
14 Jun 2021
Primary completion date
15 Dec 2024
Lead sponsor
Emory University
NCT number
NCT03543852

What you commit to

  • Study type: Interventional
  • Participants enrolled: 542
  • From 14 Jun 2021 to the primary completion date, 15 Dec 2024
  • 12 sites in 1 country
  • Visits and tests: ask the trial team, the registry does not list them

Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.

Who cannot take part

Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.

Other illness

  • survivor has a terminal illness

Who the study is looking for

  • have a designated survivorship clinic and provide a survivor healthcare plan (SHP) to survivors seen in clinic
  • have \> 100 pediatric cancer survivors seen annually
  • be willing to become a SurvivorLink partner clinic and complete a Business Associates Agreement with Emory University
  • able to enroll 75 caregivers or young adult patients
  • pediatric cancer survivor completed treatment in past year
  • English or Spanish speaking
  • able to access the internet either with a computer or smartphone
  • gives permission for the clinic and study staff to use clinical data to confirm service utilization patterns
  • gives permission to view SHP records on SurvivorLink

Age in the registry: 15 years to - · Sex: All · Does not accept healthy volunteers

Full criteria on ClinicalTrials.gov

Sites (12)

Sites in registry order. Save your city in your profile to sort them by distance.

SiteCityCountrySite status
University of Chicago Medicine Comer Children's Hospital
Coordinator of this site? Confirm its status
ChicagoUnited StatesUnknown status
Penn State Children's Hospital
Coordinator of this site? Confirm its status
HersheyUnited StatesUnknown status
Riley Children's Health
Coordinator of this site? Confirm its status
IndianapolisUnited StatesUnknown status
University of Iowa Stead Family Children's Hospital
Coordinator of this site? Confirm its status
Iowa CityUnited StatesUnknown status
Children's Hospital of Orange County
Coordinator of this site? Confirm its status
OrangeUnited StatesUnknown status
Arnold Palmer Hospital for Children
Coordinator of this site? Confirm its status
OrlandoUnited StatesUnknown status
Phoenix Children s Hospital
Coordinator of this site? Confirm its status
PhoenixUnited StatesUnknown status
University of Pittsburgh Medical Center (UPMC) Children's Hospital of Pittsburgh
Coordinator of this site? Confirm its status
PittsburghUnited StatesUnknown status
Washington University/St. Louis Children's Hospital
Coordinator of this site? Confirm its status
St LouisUnited StatesUnknown status
Upstate Medical University
Coordinator of this site? Confirm its status
SyracuseUnited StatesUnknown status
Banner University Medical Center in Tucson
Coordinator of this site? Confirm its status
TucsonUnited StatesUnknown status
Children's National Medical Center
Coordinator of this site? Confirm its status
Washington D.C.United StatesUnknown status

This page is information, not medical advice. Discuss any trial with your doctor.