Completed Public Health & Healthcare Infection & Immunity

Data sharing platforms to improve treatment outcomes in neglected tropical diseases

In plain English

AI plain-English summary

Tens of thousands of patient records from treatment trials for five neglected tropical diseases will be pooled into a single, searchable data platform. These diseases—schistosomiasis, soil-transmitted helminths, visceral leishmaniasis, melioidosis, and scrub typhus—affect millions of people in low-resource settings, but treatment data remains scattered across individual studies and programmes. Without a centralised way to combine and compare this information, researchers cannot answer key public health questions, such as which drug regimens work best across different populations or how resistance is emerging. The platform will provide secure data upload, standardised mapping of diverse datasets, and a governance framework for equitable access. It builds on an existing malaria data platform, the WorldWide Antimalarial Resistance Network (WWARN), which has already demonstrated how pooled data can guide treatment policy. If successful, this project could transform how clinicians and policymakers use real-world evidence to optimise treatment protocols for these diseases, directly improving patient outcomes in regions where healthcare infrastructure is already strained. For melioidosis and scrub typhus, the project will first assess feasibility before committing to full platform development.

View original technical description
We will develop data-sharing platforms to assimilate and collaboratively interrogate global data on i) schistosomiasis ii) soil transmitted helminths, iii) visceral leishmaniasis, iv) melioidosis and v) scrub typhus. This proposal will support the development of the technical platform and curation of data from tens of thousands of patients enrolled to treatment trials and programmatic data of these diseases for use in collaborative meta-analysis to answer key public health questions. The platform’s technical infrastructure will include secure data upload, auditable mapping of multi-disciplinary datasets to a standardised data structure, searchable data inventory and systems to request and receive data. The governance framework will ensure terms of data access that follow principles of equitable and ethical data sharing under the guidance of Science Advisory Committees nominated by the relevant disease communities. Support for the coordination and production of scientific output from the platform will be provided to ensure impact. Platform construction will leverage the expertise and investment in our existing malaria data platform, the WorldWide Antimalarial Resistance Network (WWARN). Prior funding has supported the development of successful pilot platforms for visceral leishmaniasis and schistosomiasis/soil-transmitted helminths, and we will assess the feasibility and impact of establishing platforms for melioidosis and scrub typhus.

View the original record at the funder ↗

Researchers

Philippe J Guerin (EPMC Awardee)

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Original classification

Biomedical Resources Grant

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