The CCTSI is many things to many people — but in its essence — it supports biomedical researchers in their work. One key aspect of this mission is a web-based application for building and managing online research databases called Research Electronic Data Capture or REDCap. In April of this year, REDCap hosted its inaugural conference in Latin America and the CCTSI sent Amanda Miller, MLIS and Linda Carlin, PhD, to share their expertise. Amanda and Linda provide the oversight and training for the CCTSI’s REDCap instance.
“I am so grateful that Amanda and Linda joined us in our first Latin American and Brazilian Conference!” said Katia Regina da Silva of the University of Sao Paolo Medical School in Brazil, one of the primary conference organizers.
Silva said that one of the fastest growing regions in the world for REDCap partners is Latin America. There are currently more than 170 active partners in this region, including Argentina, Brazil, Chile, Columbia, Dominican Republic, Guatemala, Honduras, Haiti, Mexico, Nicaragua, Peru, Puerto Rico, El Salvador and Venezuela. Brazil alone has 118 REDCap partners.
“Latin American REDCap partners face unique challenges while supporting REDCap, including the ability to attend the larger REDCap Conference held in the USA each year. Therefore, a regional Latin American & Brazilian REDCapCon could reach many more administrators and be designed specifically to meet our needs,” Silva said. “And globally, the impact of a more collaborative and informed group of Latin American REDCap administrators will be apparent throughout not only the REDCap Consortium but also the overall research community.”
Carlin said, “It was wonderful to be part of the beginning of this new enterprise – a separate consortium for South American REDCap users.”
Vanderbilt University’s Rob Taylor developed REDCap in 2004 on behalf of the Clinical and Translational Award (CTSA) program of the NIH. The CCTSI officially adopted the open source software in 2008 and started underwriting the costs of providing it to its members. Today CCTSI has nearly 4,000 active users of REDCap. Worldwide, REDCap has more than 728,000 users from 120 countries.
Silva said that both Carlin and Miller played an important role in the success of the conference. They also delivered several presentations and workshops on REDCap uses, features and training models.
Miller said it was inspirational to see some of the innovative ways her South American peers used the software. One example involved using a REDCap app for offline data collection to screen rural people for skin cancer. Traveling nurses from Brazil’s Hospital de Cancer de Barretos used a device that fit on a mobile phone to capture images of patient data (moles) in rural areas of Brazil. REDCap tools enabled the nurses to share the data with dermatologists from Brazil’s Hospital de Cancer and MD Anderson Cancer Center in order to determine if the moles looked benign or possibly cancerous. In other words, REDCap enabled clinicians to overcome huge geographical and financial barriers in order to provide better care.
At each conference, users and researchers share the ways in which they apply the software or ideas about future use. Developer Rob Taylor attends these conferences, listens to the ideas and then goes back to Vanderbilt to evolve the software and add new functionality. "It just goes to show that if you put a useful tool like REDCap into the hands of smart people, the things that can be accomplished are limitless," Taylor said.
“It was great to see how something you do on an everyday basis can be spread out and used among so many people,” Miller said. “I came away with so many ideas of how to make our user experience better. Now I am in touch with people from South America who I will see in August at the U.S. REDCap conference. It will be great to hear where they are with REDCap and see how we can keep working together.”
REDCap is free of cost to all users who are affiliated with not-for-profit organizations and universities; the CCTSI underwrites the costs associated with administering and providing user support for the application. For more information on REDCap at the CCTSI, contact Redcap@ucdenver.edu.