EU-funded project EuroCoord has advanced scientific understanding of HIV by bringing together patient data collected by over 100 institutions. The data are being mined for insight into better prevention and treatment strategies, including for vulnerable groups such as migrants and refugees.
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The Eurocoord virtual database contains information from over 300 000 HIV-positive adults and children from many different socio-economic settings within Europe and beyond. Researchers can also use the database to help evaluate the safety of specific drugs to treat children, for example.
Based on the data, EuroCoord has developed modelling software, SSOPHIE, that allows researchers to quantify and characterise HIV trends in Europe. Understanding the issues and the factors behind these trends is helping researchers and the wider medical community better address current and emerging issues, says project coordinator Kholoud Porter of the clinical trials unit at the UK’s University College London.
For example, researchers have been able to better assess the ongoing high rate of HIV transmission and of drug-resistant HIV in Europe. Researchers have also gained insight into the reasons behind the high rate of people who wait until they are at a relatively late stage of disease before deciding to seek testing and treatment. These ‘late presenters’ account for just under 50 % of those testing positive for HIV in Europe.
“There is still a lot of work to do to contain the epidemic, but this seems feasible now that we know that HIV therapy needs to be started as soon as a person is diagnosed for better outcomes,” says Porter.
“Pre-exposure prophylaxis is highly effective at stopping people becoming infected, and home testing kits are available to hopefully encourage greater uptake of testing, but, importantly, linkage to care must also accompany these remedies.”
EuroCoord has also produced several online e-modules to help researchers improve data gathering, sharing and clinical practices, she adds. The project has organised several training courses and a popular annual workshop on the research, which will continue to take place once the project has finished.