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Although there is mounting evidence for the benefit of large-scale data sharing from a pediatric cancer research standpoint, an initial literature search showed us that in contrast, there was very little understanding of the perspectives of pediatric cancer patients and their families regarding the use and sharing of their data. […] Our ultimate goal in asking these questions was to gauge how organizations like PCDC can best use their resources to provide the pediatric cancer community with more information.

There is great potential for improvement if pharma companies can use agreed-upon standards for collecting data and for data interoperability. Even if the companies do not intend to share their data, I would like to see a move towards collecting data in a way that ultimately, once it has been used or been published, means that the data can be shared and then studied by a larger group.

We didn’t want to do the easy thing, which is just take data and then hire people to standardize and then share it. We wanted to tackle it as a grassroots phenomenon: teach people what standards are, empower them to build a data dictionary that’s validated with international input, and then let people harmonize the data into that standard and, ultimately, use that standard to collect subsequent data.

10 year old Ruby Kaufman was diagnosed with Rhabdomyosarcoma in 2010.  After one year of grueling treatment, Ruby decided that she wanted to help other kids who were diagnosed with some type of cancer so she created a fundraiser called Ruby’s Dance Till You Drop. That fundraiser raised $72,000. Eventually, through the efforts of Ruby’s family, the Rally Foundation, and Dr. Sam Volchenboum, a grant was awarded with the money that Ruby raised from her fundraiser to help with research in the fight against this cancer.  This initial grant proved successful, and now millions of dollars in grant money has been received because of the success of the first grant, and has been used to create one of the largest Data Research Systems to help in the overall fight against Pediatric Cancer. This story is a great win for everyone involved.

As part of our mission to connect the people and resources needed to find cures, we are teaming up with one of the leading institutions on the Pediatric Cancer Data Commons initiative (PCDC), the Volchenboum Lab at the University of Chicago. They are doing the painstaking work of creating a universally shared language to make data mining viable.

“We are so excited to be building the next-generation platform for matching children with leukemia to innovative clinical trials,” Volchenboum said. “In the process, we will be creating the largest pediatric leukemia data set in the world.”

Through a single combined, open platform, the PCDC is making data available to clinicians and researchers everywhere. By harnessing pediatric leukemia data from all over the world, researchers will be able to access the largest collection of data ever available for study.

Ruby’s Dance ‘Til You Drop event provided critical seed money for Dr. Sam Volchenboum’s High Risk High Reward Grant which has gone on to receive funding from the National Institutes of Health (NIH).

The experience and skills of the PCDC team, including expertise in data standards, data harmonization and commons interoperability, made UChicago an important partner for the new CCDH.

“Everything is incentivized against sharing data right now,” says Dr. Samuel Volchenboum of the University of Chicago. “This new approach makes it imperative to share everything. We’re going to make it easy to do the right thing. … In a few years, if you’re not sharing your data people are going to be asking why.”