Collaborating with Clinicians and Scientists to Transform Data into Knowledge
Research Informatics Services created and supports a clinical data and biospecimen ecosystem consisting of the Research Database (RDB)dataSCOUT, data on samples in the Biobank, data collection through REDCap, and access to de-identified datasets/samples through an Honest Broker system. We are responsible for all of the operational and informatics integration of the RDB, REDCap, the institutional biorepository, the Honest Broker Service, and the Live Cell Core. Our staff of developers and data analysts have expertise in clinical data and clinical research data from electronic data capture through registries and reporting.
The comprehensive Research Database (RDB) was developed from both electronic health records and clinical research records. The RDB leverages the careful clinical phenotyping by our physicians so that we are able to offer our investigators and partners highly characterized (‘annotated’) information and corresponding samples for research in the full gamut of respiratory, cardiac and immunologic disease including well defined cohorts in asthma, COPD, interstitial lung disease, pulmonary hypertension, sarcoidosis, lung cancer, rare lung diseases, heart failure, rheumatoid arthritis, lupus erythematosus, and other connective tissue diseases. Data include demographics, diagnoses, medication history, lab tests, imaging reports, allergy history and more. The RDB is easily queried by using our dataSCOUT app. It also allows for download of data with the appropriate regulatory controls and is continuously updated and improved.
Beyond data tied to patient samples, the RDB provides data for grant submissions, retrospective data projects, pharma feasibility studies, clinical outcomes research and recruitment.
REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies. REDCap is maintained by the REDCap Consortium which is comprised of thousands of institutional partners including National Jewish Health, and is administrated locally by Research Informatics Services.
We support consistent and reliable procedures for the capture, management, and control of study data. We can train research and operational staff in data management for a study and develop data capture, storage and sharing procedures in compliance with federal regulations ensuring the integrity and confidentiality of patient data. Finally, we develop appropriate database structures and reporting schemes and provide ongoing data quality monitoring and analysis.
Honest Broker Services
The dataSCOUT app acts as an automated Honest Broker Service. It removes personal health identifiers from data/samples and ensures that when they are given to a researcher, they will be either in a de-identified (all identifiers removed) or a limited data set (dates included) manner. Both dataSCOUT as an automated Honest Broker and our trained Honest Brokers serve as a well-defined barrier between protected health information (PHI) and the research community to ensure confidentiality. Research on data provided by our certified honest brokers might qualify as non-human subjects research and so may not need to be reviewed by the IRB.
Ruthie Knowles, MSW, CCRP
Data Analyst/REDCap Administrator
Informatics Software Developer
Data Analyst/dataSCOUT Administrator