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
- Diseases
- Childhood cancers
- 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
Sites (12)
Sites in registry order. Save your city in your profile to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| University of Chicago Medicine Comer Children's Hospital Coordinator of this site? Confirm its status | Chicago | United States | Unknown status |
| Penn State Children's Hospital Coordinator of this site? Confirm its status | Hershey | United States | Unknown status |
| Riley Children's Health Coordinator of this site? Confirm its status | Indianapolis | United States | Unknown status |
| University of Iowa Stead Family Children's Hospital Coordinator of this site? Confirm its status | Iowa City | United States | Unknown status |
| Children's Hospital of Orange County Coordinator of this site? Confirm its status | Orange | United States | Unknown status |
| Arnold Palmer Hospital for Children Coordinator of this site? Confirm its status | Orlando | United States | Unknown status |
| Phoenix Children s Hospital Coordinator of this site? Confirm its status | Phoenix | United States | Unknown status |
| University of Pittsburgh Medical Center (UPMC) Children's Hospital of Pittsburgh Coordinator of this site? Confirm its status | Pittsburgh | United States | Unknown status |
| Washington University/St. Louis Children's Hospital Coordinator of this site? Confirm its status | St Louis | United States | Unknown status |
| Upstate Medical University Coordinator of this site? Confirm its status | Syracuse | United States | Unknown status |
| Banner University Medical Center in Tucson Coordinator of this site? Confirm its status | Tucson | United States | Unknown status |
| Children's National Medical Center Coordinator of this site? Confirm its status | Washington D.C. | United States | Unknown status |
This page is information, not medical advice. Discuss any trial with your doctor.