NIH-Funded Genomic Data Center will Focus on Childhood Cancers | Healthcare Informatics Magazine | Health IT | Information Technology Skip to content Skip to navigation

NIH-Funded Genomic Data Center will Focus on Childhood Cancers

August 22, 2017
by Rajiv Leventhal
| Reprints

The National Institutes of Health (NIH) is spearheading a $14.8 million, five-year effort to launch a data resource center for cancer researchers around the world in order to accelerate the discovery of novel treatments for childhood tumors.

Contingent on available funds, five years of funding will be provided by the NIH Common Fund Gabriella Miller Kids First Pediatric Research Program, named after Gabriella Miller, a 10-year-old child treated at Children's National.

As principal investigators, researchers at Children's Hospital of Philadelphia will lead the joint effort to build out the "Kids First" Data Resource Center. Meanwhile, Children's National Health System in Washington, D.C., will spearhead specific projects, including the Open DIPG (diffuse intrinsic pontine glioma, aggressive pediatric brain tumors that defy treatment and are almost always fatal) project, and as project ambassador will cultivate additional partnerships with public and private foundations and related research consortia to expand a growing trove of data about pediatric cancers and birth defects.

The Kids First data resource center is a centralized platform of well-curated clinical and genetic sequence data from dozens of childhood cancer and structural birth defect cohorts, comprising genetic data from thousands of patients and their families. The team will integrate large, disparate data sources, provide support for analyses, and coordinate with third-party data commons and applications, according to a press release announcement.

Researchers can use this resource to probe genetic pathways and explore genetic abnormalities that underlie childhood cancer and structural birth defects. The program will also provide funds to generate new data and facilitate deposition into a centralized database.

Officials noted that it’s important to study these conditions together because children with birth defects are at a higher risk of also developing childhood cancer, suggesting they may share an underlying cause. However, not much is known about these suspected pathways. Few large-scale genetics studies have focused on both childhood cancer and structural birth defects. These shared biological pathways may not be detected if researchers study cancer patients or those with structural birth defects independently.

Two other crucial components of the Kids First project are the teams led by Robert L. Grossman, Ph.D., and Sam Volchenboum, M.D., Ph.D., at the University of Chicago. Grossman and Volchenboum will play a key role in the technical underpinnings of the large-scale processing and sharing of genomic and clinical data for this initiative.

Grossman, the Frederick H. Rawson Professor in Medicine and Computer Science and director of the Center for Data Intensive Science at the University of Chicago, heads up an operations center that runs numerous data commons, supporting more than 20,000 researchers across the world every month. “Platforms that enable researchers to analyze securely large amounts of de-identified clinical and genomic data are one of our most powerful tools for making discoveries that improve children’s lives,” Grossman said in a statement.

The Chicago team of engineers and scientists will design and operate the cloud-based, open-source software needed to establish the data coordination center within the Kids First data resource center.

The NIH grant builds on previous funding that Congress provided to the NIH Common Fund to underwrite research into structural birth defects and pediatric cancers. In the first phase, so-called X01 grantees—including Eric Vilain, M.D., Ph.D., newly named director of the Center for Genetic Medicine Research at Children's National—received funding to sequence genetic data from thousands of patients and families affected by childhood cancer and structural birth defects.

"It's a question of numbers,” Vilain said in a statement. "The bottom line is that making sense of the genomic information is significantly increased by working through large consortia because they provide access to many more patients with the disease. What is complicated about genetics is we all have genetic variations. The challenge we face is teasing apart regular genetic variations from those genetic variations that actually cause childhood cancers, including DIPG."

Get the latest information on Health IT and attend other valuable sessions at this two-day Summit providing healthcare leaders with educational content, insightful debate and dialogue on the future of healthcare and technology.

Learn More



Healthcare Execs Anticipate High Cost Returns from Predictive Analytics Use

Healthcare executives are dedicating budget to predictive analytics, and are forecasting significant cost savings in return, according to new research from the Illinois-based Society of Actuaries.

Adam Boehler Tapped by Azar to Serve as Senior Value-Based Care Advisor

Adam Boehler, currently director of CMMI, has also been named the senior advisor for value-based transformation and innovation, HHS Secretary Alex Azar announced.

Vivli Launches Clinical Research Data-Sharing Platform

On July 19 a new global data-sharing and analytics platform called Vivli was unveiled. The nonprofit group’s mission is to promote, coordinate and facilitate scientific sharing and reuse of clinical research data.

Survey: More Effective IT Needed to Improve Patient Safety

In a Health Catalyst survey, physicians, nurses and healthcare executives said ineffective information technology, and the lack of real-time warnings for possible harm events, are key obstacles to achieving their organizations' patient safety goals.

Physicians Still Reluctant to Embrace Virtual Tech, Survey Finds

While consumers and physicians agree that virtual healthcare holds great promise for transforming care delivery, physicians still remain reluctant to embrace the technologies, according to a new Deloitte Center for Health Solutions survey.

Geisinger, AstraZeneca Partner on Asthma App Suite

Geisinger has partnered with pharmaceutical company AstraZeneca to create a suite of products that integrate into the electronic health record and engage asthma patients and their providers in co-managing the disease.