SurvivorLink: Scalability of an Electronic Personal Health Record
Completed · Not applicable
Conditions studied: Childhood Cancer
In brief
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.
Key facts
- Study ID
- NCT03543852
- Run by
- Emory University
- People needed
- 580
- Starts
- 2021-06-14
- Expected to finish
- 2024-12-25
- Last updated by the study team
- 2025-02-25
Who can join
Age: 15 and older. Sex: any. Healthy volunteers: not accepted.
Where it is running
- Phoenix Children's Hospital — Phoenix, Arizona, United States
- Banner University Medical Center in Tucson — Tucson, Arizona, United States
- Children's Hospital of Orange County — Orange, California, United States
- Children's National Medical Center — Washington D.C., District of Columbia, United States
- Arnold Palmer Hospital for Children — Orlando, Florida, United States
- University of Chicago Medicine Comer Children's Hospital — Chicago, Illinois, United States
- Riley Children's Health — Indianapolis, Indiana, United States
- University of Iowa Stead Family Children's Hospital — Iowa City, Iowa, United States
- Washington University St. Louis Children's Hospital — St Louis, Missouri, United States
- Upstate Medical University — Syracuse, New York, United States
- Penn State Children's Hospital — Hershey, Pennsylvania, United States
- University of Pittsburgh Medical Center (UPMC) Children's Hospital of Pittsburgh — Pittsburgh, Pennsylvania, United States
Full record on ClinicalTrials.gov
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