Center for Medical Ethics and Health Policy Staff Publications
Publication Date
9-2-2022
Journal
Cancer Epidemiology, Biomarkers & Prevention
DOI
10.1158/1055-9965.EPI-22-0125
PMID
35732489
PMCID
PMC9444937
PubMedCentral® Posted Date
9-2-2022
PubMedCentral® Full Text Version
Post-print
Published Open-Access
yes
Keywords
Adolescent, Cancer Survivors, Child, Delivery of Health Care, Humans, National Cancer Institute (U.S.), Neoplasms, Research, United States
Abstract
Children and adolescents diagnosed with cancer can now expect an average 85% 5-year overall survival, with significant improvements in longer-term morbidity and mortality reported over the past several decades. However, the long-term impact of therapeutic agents and modalities introduced in recent years remains unclear and will require dedicated follow-up in the years ahead. The Children's Oncology Group (COG), a part of the NCI's National Clinical Trials Network, with over 200 sites across North America and beyond, enrolls more than 10,000 patients onto research protocols annually, inclusive of first-line clinical trials and nontherapeutic studies. COG provides a platform to conduct survivorship research with several unique strengths: (i) a huge catchment to ascertain relatively rare but important adverse events, (ii) study populations that are otherwise too rare to study in smaller consortia, including access to highly diverse patient populations, (iii) long-term follow-up of clinical trial populations linked to the original trial data, and (iv) a natural platform for intervention research. Enhancements in COG infrastructure facilitate survivorship research, including a COG patient registry (Project:EveryChild), availability of a long-term follow-up tracking resource, and successful deployment of various remote-based study procedures to reduce the burden on participants and participating institutions.