Markey study paves way for solutions to boost pediatric clinical trial enrollment

child with doctor
Choreograph, iStock/Getty Images Plus

LEXINGTON, Ky. (Feb. 9, 2024) — Every year in the U.S., about 15,000 children and teens under 20 are diagnosed with cancer. Yet, most don't get a chance to participate in clinical trials, which offer the newest, most promising treatments and improve patient outcomes.

A new University of Kentucky Markey Cancer Center study published in JCO Oncology Practice sheds light on this disparity and paves the way for solutions to increase clinical trial participation among young patients with cancer.

Co-led by Eric Durbin, Dr.P.H., director of the Kentucky Cancer Registry and Cancer Research Informatics Shared Resource Facility at the UK Markey Cancer Center, the research demonstrates the feasibility of linking central cancer registry and pediatric cancer clinical trial consortium data to track patients and describe gaps in clinical trial enrollment. The research is being used to guide a nationwide linkage study between the National Childhood Cancer Registry and the Children’s Oncology Group (COG).

The research team successfully linked data from the Kentucky Cancer Registry, which tracks all new cancer cases in the state, and the COG, a national database of children enrolled in clinical trials. By matching these datasets, they identified Kentucky patients who had not enrolled in a clinical trial or other COG study.

"This study is a crucial step towards ensuring all children have access to the latest and most effective cancer treatments offered by clinical trials," said Durbin. "By pinpointing who isn't participating, we can develop strategies to bridge the gap. This is particularly important for Kentucky, which has the fourth highest incidence rate of childhood cancer compared to other states."

The researchers found that only 47% of children with cancer were enrolled in clinical trials. Younger children and those with certain cancers, like kidney, neuroblastoma, and leukemia, were more likely to be included.

Analyzing this data can help doctors understand referral patterns and identify groups underrepresented in clinical trials. The information can then be used to develop targeted strategies to increase enrollment among these groups.

Durbin collaborated on the study with the Centers for Disease Control and Prevention and the COG. 

Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under Award Numbers P30CA177558, UG1CA189955, U10CA180886 and HHSN26100001. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

This research is supported by the National Program of Cancer Registries of the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $1.8 million with 0% financed with non-governmental sources. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC, HHS, or the U.S. Government. For more information, please visit

UK HealthCare is the hospitals and clinics of the University of Kentucky. But it is so much more. It is more than 10,000 dedicated health care professionals committed to providing advanced subspecialty care for the most critically injured and ill patients from the Commonwealth and beyond. It also is the home of the state’s only National Cancer Institute (NCI)-designated Comprehensive Cancer Center, a Level IV Neonatal Intensive Care Unit that cares for the tiniest and sickest newborns, the region’s only Level 1 trauma center and Kentucky’s top hospital ranked by U.S. News & World Report.

As an academic research institution, we are continuously pursuing the next generation of cures, treatments, protocols and policies. Our discoveries have the potential to change what’s medically possible within our lifetimes. Our educators and thought leaders are transforming the health care landscape as our six health professions colleges teach the next generation of doctors, nurses, pharmacists and other health care professionals, spreading the highest standards of care. UK HealthCare is the power of advanced medicine committed to creating a healthier Kentucky, now and for generations to come.