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:

  • Developing data-driven platforms that integrate large amounts of genomic and clinical data from different disease types.

  • Empowering the collaborative discovery, engagement, and necessary partnerships across disease communities that are crucial for progress in our biological understanding of diseases.

  • Enabling rapid translation to personalized treatments for patients diagnosed with childhood cancer or structural birth defects.

  • 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

DRC at a Glance
1

Patients as Partners

Patient families can choose to partner with researchers by participating in studies seeking cures for pediatric cancer and structural birth defects.

2

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.

3

Safe & Secure

All patient information and data entered into the Kids First Data Resource Portal are de-identified to maintain patient privacy and security.

4

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.

5

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.

6

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 curated 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:

The Center for Data Driven Discovery in Biomedicine (D3b) at Children's Hospital of Philadelphia (CHOP)

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.

The Ontario Institute for Cancer Research

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.

University of Chicago

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.

Children’s National Health System

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.

Oregon Health and Science University

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.

Seven Bridges

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.

Program 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.

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Program 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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