Abstract
Objective The goal is to develop a standardized informatics computing system that can support end-to-end research data lifecycle management for biomedical research applications.
Materials and Methods Design and implementation of biomedical research informatics computing system (BRICS) is demonstrated. The system architecture is modular in design with several integrated tools: global unique identifier, validation, upload, download and query tools that support user friendly informatics system capability.
Results BRICS instances were deployed to support research for improvements in diagnosis of traumatic brain injury, biomarker discovery for Parkinson’s Disease, the National Ophthalmic Disease Genotyping and Phenotyping network, the informatics core for the Center for Neuroscience and Regenerative Medicine, the Common Data Repository for Nursing Science, Global Rare Diseases Patient Registry, and National Institute of Neurological Disorders and Stroke Clinical Informatics system for trials and research.
Discussion Data deidentification is conducted by using global unique identifier methodology. No personally identifiable information exists on the BRICS supported repositories. The Data Dictionary provides defined Common Data Elements and Unique Data Elements, specific to each of the BRICS instance that enables Query Tool to search through research data. All instances are supported by the Medical Imaging Processing, statistical analysis R, and Visualization software program.
Conclusion The BRICS core modules can be easily adapted for various biomedical research needs thereby reducing cost in developing new instances for additional biomedical research needs. It provides user friendly tools for researchers to query and aggregate genetic, phenotypic, clinical and medical imaging data. Data sets are findable, accessible and reusable for researchers to foster new research on various diseases.
- Abbreviations/ Acronyms
- BD2K
- Big Data to Knowledge
- bioCADDIE
- The biomedical and healthCAre Data Discovery Index Ecosystem
- BRICS
- Biomedical Research Informatics Computing System
- CDE
- Common Data Element
- cdRNS
- Common Data Repository for Nursing Science
- CiSTAR
- Clinical Informatics System for Trials and Research
- CNRM
- Informatics Core of Center for Neuroscience and Regenerative Medicine
- DATS
- Data Tag Suite
- DAQC
- Data Access and Quality Committee
- DDT
- Data Dictionary tool
- DOD
- U.S. Department of Defense
- DOI
- Digital Object identifier
- eForm
- Electronic Form
- eyeGene
- The National Ophthalmic Disease Genotyping and Phenotyping Network
- FAIR
- Findable, Accessible, Interoperable, Reusable.
- FDA
- U.S. Food and Drug Administration
- FISMA
- Federal Information Security Modernization Act
- FITBIR
- Federal Interagency Traumatic Brain Injury Research
- FS
- Form Structures
- GUID
- Global Unique Identifier
- MIPAV
- Medical Image Processing Analysis and Visualization
- NDAR
- National Database for Autism Research
- NEI
- National Eye Institute
- NIH
- National Institutes of Health
- NINR
- National Institute of Nursing Research
- NINDS
- National Institute of Neurological Disorders and Stroke
- PDBPDMR
- Parkinson’s Disease Biomarker Program Data Management Resource
- ProFoRMS
- Protocol and Form Research Management System
- PTSD
- Posttraumatic stress disorder
- RaDaR
- Rare Diseases Registry Repository
- REDCap
- Research Electronic Data Capture
- RDF
- Resource Description Framework
- TBI
- Traumatic brain injury
- UDE
- Unique data element
- URI
- Uniform resource identifier