In 2014, TAG began tracking HIV cure-related trials and observational studies and making the information available as a listing on our website. The primary sources are online study registries, particularly the US-based clinicaltrials.gov.
Included in the TAG listing are links to results from completed studies when available (and known to us). In 2018, we also began adding links to results from ongoing studies as they are presented or published.
This tracking has afforded us the opportunity of assessing how often the demographics of cure-related study participants are reported and to tally those demographics across studies to provide a picture of the diversity of participation in HIV cure-related research.
As a resource, TAG is making available a downloadable Excel file summarizing reporting of demographics in cure-related studies for which results have been presented or published since the beginning of 2018. The Excel file will be updated monthly to add any newly reported study results. A one-page summary table is also available as a PDF file.
Notes on the Excel file
Because TAG’s listing primarily draws from online registries, there may be unregistered trials and observational cohort studies that are not included in this summary.
Certain cohort studies have produced multiple scientific publications from 2018 to date and TAG is assessing whether the reported demographics of participants can be added to this Excel file without inadvertently double-counting participants if they were included in more than one publication. This applies particularly to the Thai Red Cross/US HIV Military Research Program acute HIV infection cohort in Thailand, the FRESH cohort in South Africa and the CODEX and PRIMO cohorts in France (relevant publications from these cohorts are included on the supplemental references page that accompanies TAG’s cure-related study listing).
Demographic categories are included exactly as reported, hence there are a variety of different but sometimes similar categories, most notably for those related to mixed or multiple races/ethnicities and unknown/not reported (suggesting that reporting could be better standardized).
As can be observed in the Excel file, reporting of participant demographics is far from optimal, with some presentations/publications including no information or only reporting participant sex and not race/ethnicity. Additionally, non-binary people and transgender women and men are not always disaggregated.
TAG is working with other advocates to improve reporting of study participant demographics.
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Treatment Action Group gratefully acknowledges the support of the Foundation for AIDS & Immune Research (FAIR) for our HIV cure-related information and advocacy resources.