About Kids First Data Resource Center
The Kids First Data Resource Center is a new, collaborative, pediatric research effort with the goal of understanding the genetic causes of and links between childhood cancer and structural birth defects.
As part of the Common Fund’s Gabriella Miller Kids First Pediatric Research Program, the Kids First Data Resource Center (DRC) is charged with:
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Developing data-driven platforms that integrate large amounts of genomic and clinical data from different disease types.
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Empowering the collaborative discovery, engagement, and necessary partnerships across disease communities that are crucial for progress in our biological understanding of diseases.
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Enabling rapid translation to personalized treatments for patients diagnosed with childhood cancer or structural birth defects.
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Accelerating discovery of genetic causes and shared biologic pathways within and across these conditions.
Collaborative and Global
While improved technologies and genome sequencing efforts have transformed diagnostic and precision medicine approaches in healthcare, childhood cancer and birth defects can be challenging to study due to the limited amounts of patient samples available in any one institution.
The Kids First Data Resource Center (DRC) is a collaborative pediatric research effort created to accelerate data-driven discoveries and the development of novel precision-based approaches for children diagnosed with cancer or a structural birth defect using large genomic datasets. The DRC is comprised of integrated core teams that support development of leading-edge big data infrastructure and provide the necessary resources and tools to empower researchers and clinicians. Additionally, the DRC will connect patients, families, and foundations with the researchers studying specific disease areas.
The DRC’s expert doctors, scientists, and researchers work together with patient families to understand the underlying causes of these diseases in children on a biological level and to ultimately support the development of improved and targeted treatments.
DRC at a glance
Patients as Partners
Patient families can choose to partner with researchers by participating in studies seeking cures for pediatric cancer and structural birth defects.
Genomic “Big Data”
Researchers contribute tens of thousands of patient DNA samples collected from blood, tissue, and saliva to be sequenced and integrated with patient clinical data in the DRC.
Safe & Secure
All patient information and data entered into the Kids First Data Resource Portal are de-identified to maintain patient privacy and security.
Data Resource Portal
The Data Resource Portal provides a central location where researchers from all over the world can access genomic data from childhood cancer and structural birth defects patients and their families. This empowers researchers to share their findings and collaborate in real time.
Cross-Disease Research
Researchers will use the Data Resource Portal to perform complex data analyses to uncover new clues into causes of childhood cancer and structural birth defects.
Precision Approach
Data accessible through the Kids First Data Resource Portal may help doctors select specific treatments for individual patients when their DNA is sequenced in the clinic.
The Kids First Data Resource Center Cores
The Data Resource Center mission is accomplished through strategic implementation of three multidisciplinary Cores with the following focus areas:
Data Resource Portal Core
The Data Resource Portal (DRP) provides a cloud-based, collaborative workspace and computational infrastructure, where data and analysis tools are readily accessible to the world-wide research community. Additionally, the DRP enables researchers to instantly search large genomic and clinical datasets using new data visualization tools, cloud-based workspace environments, and data-sharing platforms.
Data Coordination Core
The Data Coordination Center (DCC) manages the curation of genomic and clinical data contributed by Kids First Program researchers and ensures that data collected from different disease types can be brought together into one common format. The Data Coordination Center collaborates with the University of Chicago’s Bionimbus, which is a National Institutes of Health (NIH) Trusted Partner, to ensure data management, access, and use meet all required core NIH standards & established data quality, security, and service protocols.
Administrative and Outreach Core
The Administrative & Outreach Core (AOC) coordinates research activities and communications across the DRC’s partnered research landscape and engages the research community, including researchers, physicians, and patient and foundation advocates.
Kids First Data Resource Center Member Institutions-h2
Kids First Data Resource Center Member Institutions
The Kids First Data Resource Center includes investigators and researchers from Children's Hospital of Philadelphia, the Ontario Institute for Cancer Research, the University of Chicago, Children's National Health System, the Oregon Health and Science University and Seven Bridges. The DRC's mission is to create a central, cloud-based data portal to provide access to clinical and genomic sequence data from dozens of childhood cancer and structural birth defects cohorts, which represent thousands of patients and their families. DRC Member organizations will provide expertise in the following areas:
Leading the operations of the Kids First DRC. The Administrative & Outreach Core (AOC) and the Data Coordination Core (DCC) of the DRC are managed by the D3b Center.
Supporting the innovative design and development of the Kids First Data Resource Portal (DRP) and associated web-based analytic tools for Kids First's disease-specific data sets.
Partnering to manage and optimize the large-scale, genomic data processing for the Kids First initiative. They are also supporting the data coordination efforts by establishing cloud-based, open-source software needed for the operations of the Data Coordinating Center within Kids First.
Supporting project-specific efforts for the Administrative and Outreach Core within Kids First, and is also coordinating additional foundation and consortia-based partnerships for the generation of new, large-scale pediatric cancer and birth defects data.
Providing resources and new technologies to the Data Coordinating Center to support community standards and frameworks for reproducible genomic analysis. OHSU also brings a deep knowledge of cross-disease analysis, especially in cancer.
Further developing Cavatica, the scalable, cloud-based data-analysis platform using the infrastructure the company co-developed and deployed with CHOP. This platform is helping researchers collaboratively analyze genomic data sets and provides access to Kids First data by the entire scientific community.
About the Center for Data Driven Discovery in Biomedicine (D3b) at the Children's Hospital of Philadelphia
The Center for Data Driven Discovery in Biomedicine (D3b) at Children’s Hospital of Philadelphia was created in January of 2016 as a transformative healthcare discovery ecosystem to support the development of personalized care for children through collaborative, data-driven science. D3b’s multidisciplinary team brings together experts in the fields of basic science, precision medicine, bioinformatics, clinical trials, and genomic research to de-silo research efforts and empower pediatric cancer and rare disease research and data sharing throughout the scientific community. To learn more about The Children’s Hospital of Philadelphia and The Center for Data Driven Discovery in Biomedicine, visit:
About the Children’s Hospital of Philadelphia
Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals, and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. In addition, its unique family-centered care and public service programs have brought the 546-bed hospital recognition as a leading advocate for children and adolescents.
About the Ontario Institute for Cancer Research
The Ontario Institute for Cancer Research (OICR) is a collaborative, not-for-profit research institute focused on accelerating the translation of new cancer research discoveries to patients around the world while maximizing the economic benefit of this research for the people of Ontario. Funding for OICR is provided by the Government of Ontario. For more information, visit
About the Center for Data Intensive Science at the University of Chicago
The Center for Data Intensive Science at the University of Chicago is a research center pioneering translational data science to advance biology, medicine, and environmental research. Our work centers around developing instruments to integrate commons of complex data with cloud computing technology. We architect large scale commons of research data, computing resources, applications, tools, services. Through this approach, we can more effectively use data at scale to study and pursue scientific inquiry in the areas of biology, medicine, healthcare, and the environment.
About Children’s National Health System
Children’s National Health System, based in Washington, D.C., has been serving the nation’s children since 1870. Children’s National is #1 for babies and ranked in every specialty evaluated by U.S. News & World Report including placement in the top 10 for: Cancer (#7), Neurology and Neurosurgery (#9) Orthopedics (#9) and Nephrology (#10). Children’s National has been designated two times as a Magnet®hospital, a designation given to hospitals that demonstrate the highest standards of nursing and patient care delivery. This pediatric academic health system offers expert care through a convenient, community-based primary care network and specialty outpatient centers. Home to the Children’s Research Institute and the Sheikh Zayed Institute for Pediatric Surgical Innovation, Children’s National is one of the nation’s top NIH-funded pediatric institutions. Children’s National is recognized for its expertise and innovation in pediatric care and as a strong voice for children through advocacy at the local, regional and national levels. For more information, visit:
About the Oregon Health and Science University
Oregon Health & Science University is a nationally prominent research university and Oregon’s only public academic health center. It serves patients throughout the region with a Level 1 trauma center and nationally recognized OHSU Doernbecher Children’s Hospital. OHSU operates dental, medical, nursing and pharmacy schools that rank high both in research funding and in meeting the university’s social mission. OHSU’s Knight Cancer Institute helped pioneer personalized medicine through a discovery that identified how to shut down cells that enable cancer to grow without harming healthy ones. OHSU Brain Institute scientists are nationally recognized for discoveries that have led to a better understanding of Alzheimer’s disease and new treatments for Parkinson’s disease, multiple sclerosis and stroke. OHSU’s Casey Eye Institute is a global leader in ophthalmic imaging, and in clinical trials related to eye disease. For more information, visit:
About Seven Bridges
Seven Bridges is the biomedical data analysis company accelerating breakthroughs in genomics research for cancer, drug development and precision medicine. The scalable, cloud-based Seven Bridges Platform empowers rapid, collaborative analysis of millions of genomes in concert with other forms of biomedical data. Thousands of researchers in government, biotech, pharmaceutical and academic labs use Seven Bridges, including three of the largest genomics projects in the world: U.S. National Cancer Institute’s Cancer Genomics Cloud pilot, the Million Veteran Program, and Genomics England’s 100,000 Genomes Project. As the NIH’s only commercial Trusted Partner, Seven Bridges authenticates and authorizes access to one of the world’s largest cancer genomics dataset. Named one of the world’s smartest companies by MIT Technology Review, and a three-time Bio-IT World Best of Show winner, Seven Bridges has offices in Cambridge, Mass., Belgrade, London, Istanbul, Ankara, and San Francisco. For more information, visit:
DRC Impact
Researchers will be able to easily find, combine, and compare data for cross-disease analyses to identify the genetic pathways that underlie childhood cancer and structural birth defects.
Learn MoreDRC Funding
The Gabriella Miller Kids First Research Act directs funding to the NIH Common Fund to establish the Gabriella Miller Kids First Pediatric Research Program (Kids First). From this program, a grant has been funded to establish the Data Resource Center providing approximately $14.8 million over a five year period, contingent on available funds.
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