Plans to build at the University of Chicago a Pediatric Cancer Data Commons (PCDC), a globe-spanning database focused exclusively on pediatric cancers, recently got a boost from Sammy’s Superheroes Foundation. The Columbus, NE-based foundation committed $400,000 over four years to the database project, which is overseen by UChicago pediatric oncologists Susan Cohn, MD, and Samuel Volchenboum, MD, PhD, MS.
The nonprofit, tax-exempt foundation sprang from grassroots support for Sammy Nahorny, who in 2012 was diagnosed with neuroblastoma at the age of four. Two years later, when Sammy didn’t respond to surgery, chemotherapy, and a stem cell transplant, his family brought him to University of Chicago Medicine Comer Children’s Hospital to receive an innovative treatment. He was isolated in a lead-lined room while a team led by Dr. Cohn administered intensive MIBG therapy, which destroys tumor cells while leaving healthy tissue intact.
Today, Sammy is a healthy, well-adjusted fourth-grader whose mother, Erin, says shows no signs of the journey he went through on his way to recovery.
Erin notes that the gift to PCDC fits perfectly with the mission of Sammy’s Superheroes to raise awareness and much needed funding for research of all types of childhood cancer. By providing researchers and physicians around the world access to clinical and genomic data on cancer, the database promises to be a game-changer in curing and diagnosing pediatric cancer, she says.
“This project is just so exciting because of the implication it has on any child with cancer,” she adds. “There’s a big picture here. Connecting doctors and researchers across the country and world to a common database … brings together everyone with a shared voice.”
The PCDC grew out of the International Neuroblastoma Risk Group (INRG) data commons, an interactive database that allows researchers across institutions, and continents, to share clinical trial data on neuroblastoma. In 2015, the INRG was integrated with the pediatric portion of the National Cancer Institute’s Genomic Data Commons at the University of Chicago, called TARGET, to provide both clinical and genomic data on pediatric patients at once.
“Our vision for the PCDC is to include patients in clinical trials from all over the world, along with their associated clinical data,” Volchenboum says. “Eventually we will link that clinical data to genomic data in TARGET or the Gabriella Miller Kids First database, which focuses on pediatric cancer and birth defects. With the PCDC, we’ll have a single place to put all this patient information.”
For now, efforts to build the PCDC, a multi-million-dollar data platform, have been “woefully underfunded,” Volchenboum says. “The infusion of funds by Sammy’s Superheroes is much needed and should jump-start the funding process” for this important project.