Factors influencing survival and short-term outcomes of very low birth weight infants in a tertiary hospital in Johannesburg

Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.

The Research Electronic Data Capture (REDCap) data management platform was developed in 2004 to address an institutional need at Vanderbilt University, then shared with a limited number of adopting sites beginning in 2006. Given bi-directional benefit in early sharing experiments, we created a broader consortium sharing and support model for any academic, non-profit, or government partner wishing to adopt the software. Our sharing framework and consortium-based support model have evolved over time along with the size of the consortium (currently more than 3200 REDCap partners across 128 countries). While the "REDCap Consortium" model represents only one example of how to build and disseminate a software platform, lessons learned from our approach may assist other research institutions seeking to build and disseminate innovative technologies.

Background: Kangaroo Mother Care initiated after stabilization reduces mortality in infants with birthweight <2.0 kg, but the majority of deaths occur before stabilization. The safety and efficacy of Kangaroo Mother Care initiated soon after birth is uncertain. Methods: We conducted a randomized controlled trial in five hospitals in Ghana, India, Malawi, Nigeria, and Tanzania. Infants with birth weight between 1.0 and <1.8 kg were randomly assigned to immediate Kangaroo Mother Care (intervention) or to conventional care until stabilization, and Kangaroo Mother Care thereafter (control). The primary outcomes were deaths in the neonatal period (first 28 days of life) and in the first 72 hours of life. The study was stopped early on the recommendation of the DSMB owing to reduced neonatal mortality with the intervention. Results: A total of 3211 infants and their mothers were randomly allocated (1609 intervention, 1602 control group). The median daily duration of skin-to-skin contact in neonatal intensive care units was 16.9 hours (IQR 13.0–19.7) in the intervention and 1.5 hours (IQR 0.3–3.3) in control group. Neonatal death occurred in 191 infants (12.0%) and 249 (15.7%) infants, respectively (RR 0.75; 95% CI 0.64–0.89; p=0.001);death in the first 72 hours of life occurred in 74 infants (4.6%) and 92 infants (5.8%), respectively (RR 0.77, 95% CI 0.58–1.04; p=0.09). Conclusion: In infants with birthweight between 1.0 and <1.8 kg, immediate Kangaroo Mother Care (versus conventional care) resulted in a significant reduction in neonatal mortality, but not in mortality within the first 72 hours.