The future of clinical and translational research, in large part, rests on investigators’ ability to access an array of data that reflects the complex clinical care provided to patients as well as genetic and proteomic data. The trend of ‘big data’ requires a system that will access, extract, and securely aggregate data so that it may be reused in meaningful ways to facilitate clinical and translational research. The mission of the Biomedical Informatics Core is to develop and implement tools, and supporting investigators in answering critical questions to reduce health disparities among Hispanic populations.
- Specific Aim 1. Strengthen and expand the infrastructure for the storage and exchange of data necessary to the development and implementation of clinical and translational research pertinent to the reduction of health disparities, which most impact Hispanic populations.
- Specific Aim 2. Support data interoperability both between PRCTRC Consortium institutions as well as those outside of the Consortium through the development and application of informatics and analytical tools capable of providing data security and privacy, while participating in the development of national data standards.
- PRCTRC Web Portal
- Interactive PRCTRC Services Request Application Form
- REDCap (Research Electronic Data Capture)
- Hispanic Collaborative Clinical Research Data Warehouse (HC2DW)
- Participation of Biomedical Informatics staff in appropriate professional groups
- Professional development and training opportunities in biomedical informatics for faculty, staff, and students of Consortium institutions
- The Puerto Rico Clinical and Translational Research Consortium (PRCTRC) website has been redesigned to enhance ease user satisfaction. New features/improvements include:
- Website is available in Spanish and English language versions
- Paper-based application process for service access has been replaced by an Online Request for Services Application platform
- ResearchMatch, a web-based tool developed by Vanderbilt University, has been approved for use by researchers at the University of Puerto Rico Medical Sciences Campus who are conducting clinical trials. This platform enables:
- Clinical Researchers to recruit and conduct feasibility analysis for clinical trials
- Community members to register to become a potential volunteer for clinical trials in Puerto Rico and the United States
- REDCap continues to be a major resource for investigators:
- 96 research studies supported currently (3/2019) use REDCap
- 10 studies are currently (3/2019) using the REDCap Mobile App
- 359 Active Users of REDCap (3/2019) with a total of 526 total users since 2013
- Over 16 training opportunities of biomedical informatics-related topics were offered between 2012 and 2019.
- BIC resources and services, in 2017-2018, supported:
- 78 studies, an increase of 550% (up from 12 in 2010-2011)
- 45 investigators, an increase of 400% (up from 9 in 2010-2011)
- 15 peer-reviewed publications, an increase of 1400% (up from 1 in 2010-2011)
- 12 grants submitted, (up from 0 in 2010-2011)
- 5 grants funded, (up from 0 in 2010-2011)
- Hispanic Collaborative Clinical Research Data Warehouse (HC2RDW), a Hispanic population-centric clinical research data warehouse, has been established and initial data exchange has been completed and tested, from our inaugural clinical partner, the UPRMSC School of Medicine, Faculty Practice Plan. The HC2RDW currently houses clinical data on more than 275,000 patients in Puerto Rico with access to data on over 1 million patients in the U.S, through our clinical and translational partner networks. Additional Puerto Rico-based clinical partners are being added.
The Puerto Rico Clinical and Translational Research Consortium offers a self-managed, secure, web-based solution designed to support data collection strategies for research studies — REDCap.
REDCap was developed by a multi-institutional consortium created by Vanderbilt University. It is easy to use and provides functionality and features that enable researchers to rapidly develop databases for collecting and managing research data.
REDCap is a mature, secure web application for building and managing online surveys and databases. While REDCap can be used to collect virtually any type of data, it is specifically geared to support data capture for research studies. The REDCap Consortium is composed of 1,562 active institutional partners in 92 countries who utilize and support REDCap in various ways.
The REDCap application allows users to build and manage online surveys and databases quickly and securely, and is currently in production use or development build-status for more than 188,000 projects with over 260,000 users spanning numerous research focus areas across the consortium. REDCap is:
- Secure and web-based – Input data or build an online survey from anywhere in the world over a secure web connection with authentication and data logging.
- Fast – Conception to production-level database or survey in less than one day.
- Multi-site access – REDCap databases/surveys can be used by researchers from multiple sites and institutions.
- Autonomous utilization – Research groups have complete autonomy and control to add new users.
- Flexible offering multiple data export options – Exports raw data and syntax files for SAS, Stata, R, and SPSS.
- Fully customizable – You are in total control of shaping your database or survey.
- Advanced features – Mid-project modifications, auto-validation, branching logic, notifications and calculated fields.
Please note that this “trial session” is not to be used for storing any real data. ALL DATA ENTERED BY YOU WILL BE DELETED EVERY EVENING. Project information (e.g., forms, reports, etc.) will be deleted after three months.
You can request login credentials for a trial period by contacting (need to set this email address). Requests for ‘trial session’ access will be answered within 48 hours of the request.
If you visit the REDCap trial site and are still unsure if REDCap is an appropriate solution for your research study data management needs, you may email the PRCTRC REDCap team at (need to set this email address).
Software access and training for REDCap are available through the Biomedical Informatics Core of the PRCTRC. Any faculty member or student of the University of Puerto Rico Medical Sciences Campus AND any researcher who is receiving services from the Puerto Rico Clinical and Translational Research Consortium may have access to REDCap.
You can request access to REDCap by completing and submitting the PRCTRC Online Request for Services: Application Form.
For consultation services regarding setting up a database using REDCap or analyzing data collected using REDCap, please contact the Research Design and Biostatistics (RDB) Core.
- PRCTRC Hispanic Bank– provides electronic medical record (EMR)-linked patient clinical data for the translational research community.
The Hispanic Collaborative Clinical Research Data Warehouse (HC2DW) is a clinical data warehouse designed to provide translational investigators with a single source for obtaining access to large amounts of clinical data available from various healthcare and clinical systems within Puerto Rico. Data can be used for multiple research tasks including preparatory research, cohort identification, and data mining of clinical records. In addition, data may also be used for Quality Improvement projects. The goal of the PRCTRC Hispanic Collaborative Clinical Research Data Warehouse (HC2DW) is to help develop standardized processes for Comparative Effectiveness, Quality Improvement, and Drug Safety Research that will ensure compliance with regulatory requirements associated with accessing ePHI data.
The REDCap Shared Library is a repository for REDCap data collection instruments and forms that can be downloaded and used by researchers at REDCap partner institutions.
Below are some informational REDCap videos that can help you get started and gain a better understanding of the REDCap application and its functionality.
i2b2 is a project sponsored by the NIH Roadmap National Centers for Biomedical Computing. The i2b2 software is the backbone of the PRCTRC Hispanic Collaborative Clinical Research Data Warehouse (HC2DW) clinical data warehouse and serves two important purposes:
- Support de-identified browsing of patient data to allow easy identification of patient cohorts
- Allow for creation of limited sets of patient data (“Data Marts”), containing only the data needed for a particular research project.
For additional information, please contact Dr. Mary Helen Mays at firstname.lastname@example.org
Researchers interested in using the Hispanic Collaborative Clinical Research Data Warehouse (HC2DW) clinical data warehouse data for a clinical study will first need to complete the Online Request for Services:
The request will be sent to the Biomedical Informatics Core Leader for review. If the request is research-oriented and involves Personal Health Information (PHI), IRB approval will be needed. After approval, the Biomedical Informatics Core team will begin processing the data request, communicating preliminary results to the researcher(s) to facilitate data quality and validation assessments. The Biomedical Informatics and Research Design and Biostatistics Core teams will provide follow-up support to researchers on issues such as data management and use.