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NIH Center for Information Technology (CIT)

How a Federal Health Agency is Expediting Potential Cures for Disease Worldwide

Creates over three million records representing 99,000 diverse subjects on disease

Creating the foundation for a vast network of disease knowledge worldwide, the Biomedical Research Informatics Computing System (BRICS), an extensible, web-based bioinformatics platform that supports data sharing across research studies and clinical trials, is a platform breakthrough that is accelerating research efforts worldwide.  

Client

National Institutes of Health | Center for Information Technology

Services
Technology & Engineering
Strategy & Consulting
Innovation & Digital Product Management
Industry
Public Sector

The imperative for change

With millions of people affected by disease every day, researchers needed a shared platform that could make conducting research studies and clinical trials faster, simpler and more collaborative. 

However, increasingly constrained agency budgets required a system that’s scalable, disease-agnostic and flexible enough to be customized to meet the need of any research community. And because of the sensitivity of human subject data, the platform needed to securely and reliably collect, categorize and transfer applicable biomedical datasets. As the process of designing a system began, the National Institutes of Health (NIH) faced hosting, development, data integration and technical challenges.

The transformative solution

A true collaboration between government agencies, BRICS was developed as a joint effort between the NIH Center for Information Technology (CIT), NIH National Institute of Neurological Disorders and Stroke (NINDS) and the U.S. Army Medical Research and Materiel Command (MRMC) within the Department of Defense (DoD).

BRICS was established with an eye toward reusability with customizable, plug-n-play integrated software modules that could reflect an individual disease category or specific research organization. The modules include Data Dictionary, Data Repository, Meta Study, ProFoRMS, Query and Export Data, MIPAV Imaging Data Submission and Account Management. Organizations and other users can select as many or as few of the integrated modules for their study needs.

"The core of all of our research in the Parkinson’s Disease Biomarker Program is to redefine Parkinson’s. BRICS allows an avenue for researchers to unite, collaborate and ultimately expedite the advancement of understanding and treatment of Parkinson’s disease."
F. DuBois Bowman, Ph.D., Parkinson’s Disease Biomarker Program Data Management Resource

The BRICS team also used the Global Unique Identifier (GUID) system model to allow researchers to share data specific to study participants and correlate participants across studies without exposing personally identifiable information (PII). Researchers that are focused on biomarker discovery have access to biosamples and associated detailed subject data and can track a research subject’s progress over time.

To prevent future data disparity issues, the BRICS team has worked to support and provide subject matter expertise to several working groups across various diseases. BRICS’ direct connections between systems creates a vast network of disease knowledge, linking data to allow researchers to infer new information, expedite their findings and identify methods to prevent the disease and treat or cure patients.

Impact

Five major disease research programs (groups) are already benefitting from using BRICS to support more than 200 research studies by more than 400 principal investigators. To date, this has created a master cohort of over three million records representing approximately 99,000 diverse subjects across the 11 disease instances. Early applications include projects for Parkinson’s disease and traumatic brain injuries.

Because of its easily maintainable and scalable design, BRICS helps minimize cost while enabling rapid program deployment by other organizations. Today, BRICS is used as the foundation for a range of biomedical informatics platforms and data repositories including the:

  • Common Data Repository for Nursing Science (cdRNS)
  • Rare Diseases Registry Program (RaDaR) (formerly Global Rare Diseases Patient Registry (GRDR))
  • Center for Neuroscience and Regenerative Medicine’s (CNRM) Informatics Core
  • Clinical Informatics System for Trials and Research (CiSTAR)
  • Federal Interagency Traumatic Brain Injury Research (FITBIR) informatics systemParkinson’s Disease Biomarkers Program Data Management Resource (PDBP DMR)
  • National Eye Institute (Patient-Reported Outcomes with LASIK (PROWL), National Ophthalmic Disease Genotyping and Phenotyping Network (eyeGENE), Age-related macular degeneration (AMD) Systems Biology)
  • National Trauma Research Repository (NTRR)
  • National Institute of Aging (NIA)
  • National Institute of Neurological Disorders and Stroke (NINDS)
"We need to be able to predict which patterns of injury are rapidly reversible and which are not. FITBIR will help researchers get closer to answering some important questions about concussion for our youth who play sports."
Story Landis, Ph.D., Former director of NINDS