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A model for managing research data in infrastructure challenged regions

Thursday, October 11, 2012 — Poster Session IV

2:00 p.m. – 4:00 p.m.

Natcher Conference Center, Building 45




  • M. Holdsworth
  • K. Newell
  • C. Whalen
  • M. Tartakovsky


Background: Data management in infrastructure challenged regions, presents many difficulties. Primarily, there is a lack of skilled staff as well as underdeveloped infrastructure, like insufficient and inconsistent power supply and limited Internet connectivity. These regions hold particular interest to NIAID because of emerging and re-emerging diseases. Over the past 2 years, the Office of Cyber Infrastructure and Computational Biology (OCICB) has developed a model for managing research data in infrastructure challenged regions using DataFax® software, a specific hardware/network architecture and a suite of support services. Method: We built the model based on one of DIR’s international sites, the Infectious Diseases Institute (IDI) in Uganda. Subsequently, we have based our findings on a systematic qualitative review of researchers’ experiences, after having implemented the model. Results: Qualitative review shows that the model improves the quality of data, facilitates study logistics, improves data availability and accessibility, and reduces costs. Importantly, the model also decreases the time between completion of study follow-up and availability of clean data for final analyses. Conclusions: The model is a cost effective way to manage research data and deals with many of the difficulties presented by infrastructure challenged regions.

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