St. Jude portal offers unprecedented access to share and analyze data on childhood cancer survivors

Details on the St. Jude survivorship portal and its ability to facilitate breakthroughs in pediatric cancer survivorship research were published recently in Cancer Discovery, a journal of the American Association for Cancer Research.

The portal integrates data involving whole genomic sequencing, treatment exposure and outcomes — creating an unprecedented research system that houses 400 million genetic variants from over 7,700 childhood cancer survivors. 

“With the portal, with just one click, you can make new discoveries,” said co-corresponding author Jinghui Zhang, PhD, St. Jude Department of Computational Biology. “In the past, people would spend weeks downloading, analyzing, organizing and summarizing data into figures — now you can do all that in just minutes.”

The portal is free to use and open access as a part of the St. Jude Cloud ecosystem. 

Research at St. Jude has been instrumental in increasing childhood cancer survival rates over the past 61 years, and today approximately 85 percent of childhood cancer patients in the U.S.  are successfully treated and alive five years post-diagnosis.  Research at St. Jude has shown that experiencing cancer as a child can have long-term implications on the survivor’s health, placing increased focus on finding interventions to improve and maintain the quality of life for survivors and developing new cancer therapy with reduced toxicity. 

St. Jude is amassing a wealth of survivorship data through two key efforts: the Childhood Cancer Survivor Study, a collaborative effort representing 31 institutions spanning North America and compiling data on a range of childhood cancers, and the St. Jude Lifetime Cohort Study(St. Jude LIFE). St. Jude LIFE is a long-term follow-up study  for St. Jude patients where participants are brought back to the hospital every five years for an assessment. 

All the data generated from those two cohorts can now be found in the Portal, providing new insights and greater understanding in the way childhood cancer treatments affect survivors later in life.

“There are half a billion clinical data points in the portal, hundreds of terabytes of genetic data supported by dynamic and interactive visualization analysis," said Xin Zhou, PhD, St. Jude Department of Computational Biology.  

“We aren’t just sharing data,” said Yutaka Yasui, PhD, St. Jude 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.”

Some new findings from the data in the Portal include:

• • Platinum chemotherapy has been used for decades to treat cancer and is known to cause hearing damage, but the data in the portal was able to show that not all types cause the same amount of damage.  

• • A novel association between mental health, age and limb amputation. Receiving an amputation at an older age (teenage compared to earlier childhood) is associated with increased resilience against poor mental health. 

• • Gene mutations associated with placing survivors of African ancestry at greater risk for developing heart disease later in life. 

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