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PLoS One. 2019 Mar 28;14(3):e0214284. doi: 10.1371/journal.pone.0214284. eCollection 2019.

A medical records and data capture and management system for Lassa fever in Sierra Leone: Approach, implementation, and challenges.

Author information

1
Department of Global Biostatistics and Data Science, School of Public Health and Tropical Medicine, Tulane University, New Orleans, Louisiana, United States of America.
2
Departments of Pediatrics and Internal Medicine, Sections of Pediatric & Adult Infectious Diseases, School of Medicine, Tulane University, New Orleans, Louisiana, United States of America.
3
Viral Hemorrhagic Fever Program, Kenema Government Hospital, Kenema, Sierra Leone.
4
Ministry of Health and Sanitation, Freetown, Sierra Leone.
5
Department of Microbiology and Immunology, Tulane University, New Orleans, Louisiana, United States of America.
6
Vanderbilt University Institute for Global Health, Nashville, Tennessee, United States of America.
7
Zalgen Labs, LLC, Germantown, Maryland, United States of America.

Abstract

Situated in southeastern Sierra Leone, Kenema Government Hospital (KGH) maintains one of the world's only Lassa fever isolation wards and was a strategic Ebola virus disease (EVD) treatment facility during the 2014 EVD outbreak. Since 2006, the Viral Hemorrhagic Fever Consortium (VHFC) has carried out research activities at KGH, capturing clinical and laboratory data for suspected cases of Lassa fever. Here we describe the approach, progress, and challenges in designing and maintaining a data capture and management system (DCMS) at KGH to assist infectious disease researchers in building and sustaining DCMS in low-resource environments. Results on screening patterns and case-fatality rates are provided to illustrate the context and scope of the DCMS covered in this study. A medical records system and DCMS was designed and implemented between 2010 and 2016 linking historical and prospective Lassa fever data sources across KGH Lassa fever units and its peripheral health units. Data were captured using a case report form (CRF) system, enzyme-linked immunosorbent assay (ELISA) plate readers, polymerase chain reaction (PCR) machines, blood chemistry analyzers, and data auditing procedures. Between 2008 and 2016, blood samples for 4,229 suspected Lassa fever cases were screened at KGH, ranging from 219 samples in 2008 to a peak of 760 samples in 2011. Lassa fever case-fatality rates before and following the Ebola outbreak were 65.5% (148/226) and 89.5% (17/19), respectively, suggesting that fewer, but more seriously ill subjects with Lassa fever presented to KGH following the 2014 EVD outbreak (p = .040). DCMS challenges included weak specificity of the Lassa fever suspected case definition, limited capture of patient survival outcome data, internet costs, lapses in internet connectivity, low bandwidth, equipment and software maintenance, lack of computer teaching laboratories, and workload fluctuations due to variable screening activity. DCMS are the backbone of international research efforts and additional literature is needed on the topic for establishing benchmarks and driving goal-based approaches for its advancement in developing countries.

Conflict of interest statement

The Viral Hemorrhagic Fever Consortium (VHFC; vhfc.org) is a partnership of academic and industry scientists developing diagnostics, therapeutics, and vaccines for Lassa fever and other severe diseases. Tulane University and various industry partners have filed United States and foreign patent applications on behalf of the VHFC for several of these technologies. If commercial products are developed, VHFC members may receive royalties or profits. The authors MLB, LMB, and RFG are current employees or affiliates of Zalgen Labs, LLC. This does not alter our adherence to PLOS ONE policies on sharing data and materials.

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