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

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.

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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