Federal Interagency Traumatic Brain Injury Research (FITBIR)
Joining forces to diagnose and treat traumatic brain injuries.
Traumatic brain injury (TBI) is the leading cause of death and disability in children and adults ages 1 to 44 and is a serious medical problem for both military and civilian populations. To better understand its impact and reduce TBI-related deaths, the Department of Defense (DoD) and the National Institute of Neurological Disorders and Stroke (NINDS) worked together to create FITBIR, the Federal Interagency Traumatic Brain Injury Research program.
FITBIR is built with a set of reusable and scalable BRICS components, which helps researchers manage the large volume of complex data generated by studying the human brain. Unlike other TBI informatics systems, FITBIR covers the full spectrum of age (children and adults), injury severity (concussion to death), and time (pre-hospital to chronic). As of December 01, 2022 the system houses data for over 84,000 research subjects have been submitted to the FITBIR system including over 170,000 Clinical Imaging Datasets.
On August 5th, 2020, FITBIR received CoreTrustSeal Certification making it the first BRICS instance to achieve the Core Trustworthy Data Repository designation.
Today, FITBIR supports more than 160 studies and spans a hundred Principal Investigators (PIs), dozens of universities and research systems, the Department of Defense, and the National Institutes of Health. With a secure platform for defining, accessing, and sharing data, researchers are moving closer to discovering new ways to diagnose and treat TBI. View FITBIR Summary Data Visualization.
The Informatics Core of Center for Neuroscience and Regenerative Medicine (CNRM)
A Catalyst for Brain Injury Research
The CNRM is a federal medical research program that has transformed collaborative interactions between the U.S. Department of Defense, the National Institutes of Health, and the Walter Reed National Military Medical Center. The Informatics Core provides services such as electronic data capture and reporting for clinical protocols, participation in national TBI research and data repository community, research computing infrastructure, integration of CNRM technology requirements, and maintenance of CNRM central data repository. In addition, the Informatics Core has played the important role of providing technical and clinical expertise in steering the development of multiple BRICS modules used by FITBIR.
Parkinson’s Disease Biomarker Program
Accelerating the search for signs of Parkinson’s disease.
Parkinson’s disease affects more than six million people around the world; One major hurdle in the treatment of Parkinson’s has been a lack of biomarkers – telltale changes in the body that can be used to predict, diagnose, or monitor a disease. The National Institute of Neurological Disorders and Stroke (NINDS) started the Parkinson’s Disease Biomarker Program (PDBP) to accelerate the advancement of Parkinson’s diagnoses and treatments.
At the center of the PDBP effort is its Data Management Resource (DMR). Built from BRICS components, the PDBP DMR uses a system of standardized data elements and definitions. This makes it easy for researchers to compare data to previous studies, access images and other information, and order biosamples for their own research.
While the program owes much of its progress to BRICS, the partnership is mutually beneficial. PDBP has made a number of contributions to the BRICS system, such as the development of the ProFoRMS data capture module and shared NINDS Dictionary. In addition, an investment into a BRICS plug-in for managing biosamples resulted in a partnership with the Michael J. Fox foundation. View Parkinson's summary data.
NEI Data CommonsNational Ophthalmic Disease Genotyping and Phenotyping Network (eyeGENE)
The National Ophthalmic Disease Genotyping and Phenotyping Network (eyeGENE) is a research venture created by the National Eye Institute (NEI), part of the National Institutes of Health (NIH), in response to promising scientific discoveries in genetics. eyeGENE aims to advance studies of eye diseases and their genetic causes by giving researchers access to DNA samples, clinical information, and patients looking to participate in research studies and clinical trials. View eyeGene Data Exploration.
Prowl: The Patient-Reported Outcomes with LASIK (PROWL) study in the LASIK Quality of Life Collaboration Project assessed visual symptoms both before and after their LASIK surgery to identify changes over time. The study also measured the impact symptoms directly had on performing usual activities, which had not previously been done.
AMD Integrative Biology Initiative: Age-related macular degeneration (AMD) is a disease that blurs the sharp, central vision you need for “straight-ahead” activities such as reading, sewing, and driving. AMD affects the macula, the part of the eye that allows you to see fine detail. In an effort to build on the AREDS2 investments, the NEI is working to correlate clinical AMD disease phenotypes in a cellular model with patient genotype and imaging information in the newly created AMD Integrative Biology Initiative, make this Initiative available to the research community with induced pluripotent stem cells (iPSCs) derived from AREDS2 participants with specific genetic risk factors for AMD.
For additional BRICS Data Support: View NEI Data Commons.
National Institute of Nursing Research (NINR)
The mission of the National Institute of Nursing Research (NINR) is to promote and improve the health of individuals, families, and communities. To achieve this mission, NINR supports and conducts clinical and basic research and research training on health and illness, research that spans and integrates the behavioral and biological sciences, and that develops the scientific basis for clinical practice (https://www.ninr.nih.gov/aboutninr/ninr-mission-and-strategic-plan). The NINR, part of the National Institutes of Health (NIH), is a leading supporter of clinical studies in symptom science and self-management research. To harmonize data collected from clinical studies, NINR is spearheading an effort to develop CDEs in nursing science.
National Institute on Aging
The National Institute on Aging (NIA) uses the BRICS platform to generate, manage, save, and search Global Unique Identifiers (a.k.a Privacy Preserving Record Linkage (PPRL) identifiers). The Global Unique Identifier (GUID) enables data to be associated with a research participant without exposing or transferring the research participant’s Personally Identifiable Information (PII). NIA has been piloting the use of GUIDs in their Alzheimer's disease and related dementias research portfolio. The future direction for the NIA GUID instance is to identify potential issues and opportunities needed before moving toward a more universal adoption of the GUID.
For an NIA pilot, the BRICS team has deployed a BRICS instance that enables data discovery (including filtering and querying) across NIA’s longitudinal cohorts. NIA’s goals are to (1) increase transparency, scientific quality and collaboration through improved public access to the aging and Alzheimer’s Disease/Alzheimer’s Disease-Related Dementias (AD/ADRD) cohort’s descriptive information and (2) assist the research community in identifying and accessing population-based resources for research in aging and AD/ADRD. In support of these goals, the BRICS team is working with NIA staff to develop a pilot cohort database containing five longitudinal studies.
Click here to access the NIA Repository (Only available internally via NIH VPN connection).
National Trauma Research Repository (NTRR)
Trauma is defined as a bodily wound or shock produced by sudden physical injury, such as that from violence or an accident, including vehicle crashes, severe falls, gunshots or knives, blunt force, blasts and burns. Trauma is uniquely defined by the severity and location of the injury. Trauma is the #1 cause of death (from age 1 to 46) overall in the United States. The National Trauma Research Repository (NTRR) is a comprehensive web platform for managing research datasets to support data sharing among trauma investigators. It is a central, cloud-based repository for the clinical data resulting from both military funded and civilian research efforts. NTRR repository data covers the entire patient care trajectory: from injury prevention, point of injury, en route care, hospital care, rehabilitation and long-term outcomes. The system allows researchers to share original data sets and request shared data sets for secondary analyses.
Clinical Informatics System for Trials and Research (CiSTAR)
https://cistar.ninds.nih.gov Can't get to this extramurally*
CiSTAR is the first international collaborative development project for a clinical research information system at NIH. Using five BRICS modules, CiSTAR merges two existing systems into one to support clinical trials and research.
The NIH/NCATS RaDaR® Program
RaDaR Rare Diseases Registry Program, NCATS
The NIH/NCATS RaDaR Rare Diseases Patient Registry Data Repository/GRDRSM program is designed to advance research for rare diseases and, through the application of scientific insights gained, to further research for common diseases as well.
- International Community
- GUID and Accounts Standalone
- Private Hosted Solution
While the program owes much of its progress to BRICS, the partnership is mutually beneficial.