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TGen and PNOC take part in launch of NIH-supported Kids First Data Resource Portal

TGen and PNOC take part in launch of NIH-supported Kids First Data Resource Portal

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As part of a national initiative to solve children’s diseases, the Translational Genomics Research Institute (TGen) and the Pacific Pediatric Neuro-Oncology Consortium (PNOC) are participating in the launch of the Kids First Data Resource Portal, which is supported by the National Institutes of Health (NIH).

The portal is designed to accelerate ways to better diagnosis, monitor and treat diverse types of pediatric diseases, including childhood cancers, by giving scientists and physicians an easy way to access large-scale genomic and clinical datasets.

In addition to NIH-funded pediatric cancer datasets, TGen and PNOC are leading the way for access to clinical trial genomics data by partnering with the Children’s Brain Tumor Tissue Consortium (CBTTC), an organization leading the launch of a Pediatric Brain Tumor Atlas initiative announced today as part of the Kids First portal launch.

The portal includes secure access to clinical trial genomic sequencing data shared by TGen and PNOC about children with DIPG (diffuse intrinsic pontine glioma), a type of inoperable brain cancer that forms deep within the brain stem in an area known as the pons. Currently, there are no effective treatments for this aggressive cancer, which most commonly strikes very young children.

“TGen is grateful that the Kids First Data Resource Portal is open for scientists to access and study the genomics of pediatric diseases, especially including the work TGen is doing in DIPG clinical trials,” said Dr. Michael Berens, TGen Deputy Director and head of the institute’s brain cancer research and DIPG investigations.

“We want our findings and data to be shared with other researchers; to build new insights and collaborations, using genomic-based precision medicine to better care for these kids,” Dr. Berens said.

The NIH Common Fund’s Gabriella Miller Kids First Pediatric Research Program launched in 2015 following congressional passage of the Gabriella Miller Kids First Research Act, named for a child who succumbed to DIPG. The act authorizes $12.6 million each year to support pediatric research at NIH, contingent on available funds.

“While a number of NIH-supported and consortia-based research efforts have supported large-scale genomics data depositions from research biospecimens, PNOC recognizes the value and need for the rapid deposition of deep molecular and genomic clinical trial data to further accelerate discovery and clinical translation on behalf of patients, especially in deadly diseases like DIPG,” said Sabine Mueller, a pediatric neuro-oncologist at the University of California San Francisco’s Benioff Children’s Hospital and PNOC Project Leader.

Today’s opening of the Kids First Data Resource Portal provides access to data from approximately 8,000 DNA and RNA samples from patients and their family members, with a total of 30,000 expected to become available over the next few years, making it the largest pediatric data assembly of its kind. It will include data about numerous childhood cancers, birth defects, and at least 18 different diseases.

As the Kids First Data Resource Center’s chief outward-facing tool, the Kids First Data Resource Portal will serve the needs of patients, researchers and clinicians, providing the necessary tools and computational resources for analysis and interpretation of these complex data.

The Kids First Data Resource Center is led by the Center for Data Driven Discovery in Biomedicine at Children’s Hospital of Philadelphia, in partnership with CHOP’s Department of Biomedical and Health Informatics (DBHi), Children’s National Medical Center, Ontario Institute for Cancer Research Institute, Center for Data Intensive Science at the University of Chicago, Oregon Health and Science University, and Seven Bridges.

Besides research in DIPG in partnership with PNOC, TGen’s children’s programs includes the institute’s Center for Rare Childhood Disorders, its participation in Beat Childhood Cancer (formerly known as the Neuroblastoma Medulloblastoma Translational Research Consortium, or NMTRC), pediatric cancer drug development, and other research projects.


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