Discoveries are ‘one click’ away with the St. Jude survivorship portal

The population of pediatric cancer survivors is growing — around 85% of childhood cancer patients survive to five years post-diagnosis in the US, with most living decades beyond that. But with more survivors comes more people at risk of adverse health effects caused by cancer or their cancer treatment.  

Researchers are studying childhood cancer survivors to learn how to tailor improved therapies, provide screening, and support patients later in life. However, this research hinges on access and the ability to analyze collected comprehensive survivorship data systematically. In a boon to such studies, scientists at St. Jude created the St. Jude Survivorship Portal, the first data portal of its kind dedicated to sharing, analyzing, and visualizing cancer survivorship data — all open access and free to use as part of the St. Jude Cloud ecosystem.

Poised to offer significant contributions to survivorship research thanks to its two large survivorship cohorts, the Childhood Cancer Survivor Study (CCSS) and the St. Jude Lifetime Cohort (St. Jude LIFE), St. Jude already possessed a rich data source for investigators to mine new survivorship insights. The creation of the survivorship portal serves as a tool that leverages this wealth of data and offers a resource that has the potential to propel the field of survivorship research forward.

“We aren’t just sharing data,” said co-corresponding author Yutaka Yasui, PhD, Department of Epidemiology and Cancer Control. “We are facilitating the analysis and visualization of data and making it free to anyone — that’s a tremendous resource for the cancer survivorship community.”

Published in Cancer Discovery, scientists at St. Jude unveiled the big-data platform incorporating clinical and genomic information. The unprecedented research system integrates three sets of data: whole genomic sequencing, treatment exposure, and outcomes, in which there are 1,600 phenotypic variables and 400 million genetic variants from over 7,700 childhood cancer survivors. 

Maintaining such an expansive data platform is a commitment the St. Jude team willingly assumes, ensuring access to a vast resource is sustained. 

“Continued enhancement on the portal architecture is key to enable on-the-fly analysis, which integrates data on treatment exposures, whole genome sequencing, and long-term outcomes,” said co-corresponding author Xin Zhou, PhD, Department of Computational Biology. “There are half a billion clinical data points in the portal and hundreds of terabytes of genetic data supported by dynamic and interactive visualization analysis.”

Among the various use cases that served to illustrate the discovery potential of the portal, the research team highlights their comparison of associated outcomes for two types of platinum chemotherapies, cisplatin and carboplatin, reaffirming that cisplatin is associated with greater auditory toxicity than carboplatin. 

“By enabling the study of the mechanisms underlying toxicity, the portal can inform investigators how to prioritize drugs for treatment,” said co-corresponding author Jinghui Zhang, PhD, Department of Computational Biology. “Investigators can come to the portal with different interests, genetics, drug usage and exposure, or survivorship — these perspectives can all be explored in the portal.”

Treatments for pediatric cancers have improved, vastly increasing survival and reducing toxicity. More than 85% of U.S. patients are effectively cured of their primary tumor after treatment. This increased success has led to a growing survivor population reaching adulthood.

This study used data from the Childhood Cancer Survivor Study (CCSS), a national collaborative housed at St. Jude. By comparing the data from thousands of CCSS participants to that from the public, the investigators found that even decades after anti-cancer treatment, survivors experience four times the expected mortality risk of the general population.

“We identified that long-term survivors of childhood cancer are experiencing a rate of death above what would be expected for the general aging population,” explained first and corresponding author Stephanie Dixon, MD, MPH, Department of Oncology. “We were the first to find that these excess deaths are predominantly due to the same leading causes of death as in the general population, including second cancers, heart disease, cerebrovascular disease or stroke, chronic liver and kidney disease, and infectious causes of death, experienced at a younger age and higher rate in childhood cancer survivors.”

The CCSS is the largest cohort of childhood cancer survivors in North America, representing an estimated 20% of survivors in that region. The researchers used this cohort’s vast data to isolate variables affecting survivor mortality statistically. Their work demonstrated that even when common confounders, such as sociodemographic features, were controlled for, the gap between survivors and the public persisted — but so did the protective effects of a healthy lifestyle.

“Independent of prior treatment and sociodemographic factors, a healthy lifestyle and absence of cardiovascular risk factors, such as hypertension and diabetes, were associated with reduced health-related mortality risk,” said Dixon. “This suggests that while continued efforts to reduce treatment intensity and improve five-year survival are needed, future research should also focus on tailoring interventions for modifiable lifestyle and cardiovascular risk factors to survivors to reduce chronic disease development and extend their lifespans.”