Hubert Hickman, D4CG’s Senior Data Strategist and Data Operations Lead, created a calculator to help understand the potential impact of the cuts to NIH federal research funding for indirect costs proposed in a February 7 memo. The calculator has been used by researchers and institutions to add up the potential losses to their research funding, and has been mentioned in several news articles about the topic:
A sweeping pursuit to collect and standardize health information is a longtime mission of Samuel Volchenboum — and the effort is gaining global attention.
PREDICT is a concentrated effort to fully understand monogenic diabetes, a rare form of diabetes that accounts for less than five percent of all cases in the US. Louis Philipson, MD, PhD, James C. Tyree Professor of Diabetes Research and Care, said, “We realized our own databases only go so far in understanding the full aspect of this unusual form of diabetes. While we’ve identified roughly 1,500 people with known cases of monogenic diabetes, we’re at a crossroads trying to make headway and we need to have many more groups involved.”
“Data for the Common Good,” Philipson said, “will give us the structure that we need to do this work. The potential for international collaboration will multiply our ability to understand how these genes work and identify appropriate treatments.”
This massive international collaboration creates larger datasets with better genetic and geographical diversity within the available data. The recent launch of the PCDC Data Portal allows researchers easy access to this diverse data. The St. Baldrick’s Foundation has proudly provided essential support for the development and launch of the PCDC data portal and analysis tools.
Sam Volchenboum joined the MIB Agents Osteosarcoma Alliance’s series OsteoBites to discuss the process of building a data commons and lessons learned along the way.
Sam Volchenboum joined WGN News along with St. Baldrick’s Foundation volunteer event organizer Mary O’Brien to talk about Childhood Cancer Awareness Month and the advances made possible by fundraising efforts like Mary’s.
In addition to testing numerous targeted therapies, LLS PedAL will consolidate pediatric cancer data from all sites into a single data set known as the Pediatric Cancer Data Commons (PCDC). Comer Children’s pediatric oncologist Sam Volchenboum, MD, PhD, director of the PCDC, is leading the bioinformatics component of LLS PedAL and is developing and deploying the two-part data platform on which the pilot project will run.
“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.”
St. Baldrick’s Foundation Impact Series
September 8, 2022
Sam Volchenboum joined the St. Baldrick’s Foundation Impact Series to discuss the past, present, and future of the PCDC with St. Baldrick’s CEO Kathleen Ruddy.
Solving Kids’ Cancer welcomed Sam Volchenboum to their podcast This Week in Pediatric Oncology to discuss the PCDC and GEARBOx, the importance of these two platforms, and the challenges and barriers to data collaboration.
The PCDC’s partnership with The Leukemia & Lymphoma Society (LLS) was highlighted in an interview with LLS Chief Medical Officer Dr. Gwen Nichols on Fox 32 Chicago. As part of the LLS PedAL Master Clinical Trial, PCDC is working with LLS to build GEARBOx, a clinical trials matching tool, as well as an AML data commons.
The PCDC has demonstrated that it is possible to combine multiple data sets and overcome the challenges of studying rare diseases. Therefore, the PCDC hopes to expand beyond childhood cancer. There are plans to use the platform for both cancers in young adults and rare genetic diseases. Altogether the PCDC is a very exciting initiative that aims not only to make data more accessible but to speed up advances in medicine to improve outcomes in childhood cancers.
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.
Clinical Research as a Care Option
March 2021
Find the interview with Sam Volchenboum on page 16.
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.
Rally Foundation
November 16, 2019
Scroll down to the third video for an interview with Sam Volchenboum.
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.”