The Coalition for Operational Research on Neglected Tropical Diseases (COR-NTD) has launched its data repository, the COR-NTD Research Dataverse. Dataverse is a tool that not only provides additional data transparency, but also paves the way for modelling, secondary analysis and replication, while protecting study participant privacy.
“Dataverse is meant to increase the spirit of collaboration,” says Sarah Sullivan, Senior Data Analyst at the NTD Support Center, the secretariat of COR-NTD. “For example, Dataverse gives the mathematical modeling community and others access to data to assist in their efforts such as predicting where an NTD may be endemic or developing a potential timeline to elimination based on prevalence. It also ensures that the researchers who originally collected the data get credit for and additional research based on the data they collected, so it’s a real win-win.”
The tool includes metadata, documentation such as protocols and questionnaires used to collect the data, and de-identified results of these studies. In the next 6 months, the data from at least 25 studies will be available through this tool.
The implementation of Dataverse aligns with one of the overarching goals of the World Health Organization’s 2030 Neglected Tropical Disease Roadmap: “to integrate approaches to achieve targets through crosscutting activities that intersect multiple diseases.” (Source: Ending the neglect to attain the Sustainable Development Goals: A road map for neglected tropical diseases 2021–2030, World Health Organization, January 2020.)
Dataverse is coordinated by COR-NTD, which is funded primarily by the Bill & Melinda Gates Foundation, by the United States Agency for International Development through its Neglected Tropical Diseases Program, and with UK aid from the British people.
The repository is FAIR (findability, accessibility, interoperability, and reusability) compliant. Data is summarized at the community, school or district level for privacy purposes. Metadata available with the summarized data also clearly identify the researchers involved in each study. All research released has also been approved as such by the researchers. Additionally, data release is embargoed until one year after the completion of the study to ensure the research team has enough time review and publication. Additional study results will be made available as completed and once embargo has lifted.
The Dataverse can be accessed directly at ntddataverse.org or https://dataverse.unc.edu/dataverse/COR-NTD. Additionally, you can search for active and completed studies in the COR-NTD ConnectOR, and completed studies will be linked to their data in the Dataverse. The research community is also welcome to submit their metadata for inclusion via COR-NTD’s operational research inventory, NTD ConnectOR, by filling out this form. Please direct any questions about the COR-NTD Research Dataverse to firstname.lastname@example.org.