# Registry Linkage to Improve Mortality Ascertainment and Assessment of Engagement in Care in Brazil, Mexico, and Peru

> **NIH NIH R21** · VANDERBILT UNIVERSITY MEDICAL CENTER · 2021 · $233,196

## Abstract

PROJECT SUMMARY (ABSTRACT)
 HIV remains a massive public health challenge in Latin America, with nearly 1.8 million adults living with
HIV in the region's low- and middle-income settings. In order to identify key risk groups and deploy relevant
interventions to end the HIV epidemic, researchers and public health organizations need high quality data
regarding patient retention in clinical care, antiretroviral therapy (ART) use, and mortality estimates. Clinical
cohorts are an excellent data source for measuring the quality and frequency of care, but can provide only
imperfect measurements of sustained engagement and various clinical outcomes because of losses to follow-
up (LTFU). Individuals lost to follow-up at particular clinical cohort sites appear to have “disappeared” from the
point of the data, but may in fact experience silent transfers (wherein patients switch clinics without notice),
true gaps in care (wherein patients have truly discontinued medical care), or an unobserved fatal event.
Groups like the World Health Organization (WHO) currently use post hoc analytic approaches to correct for
LTFU, but no correction factors are available for Latin America. As a result, the WHO is currently applying
estimates from sub-Saharan Africa to Latin America, where the populations may be very different.
 We propose to measure clinical and vital outcomes in the lost population through linkages between clinical
data sources and well-established state/provincial or national registries. This tracing strategy of registry linkage
has the benefit of being relatively low-cost and low-effort for clinical sites that may already be resource-
constrained. The resulting revised estimates of LTFU could improve engagement outcome measurements,
reduce potential selection bias and misclassification errors in research from these settings, and inform both
researchers and public health stakeholders.
 The Caribbean, Central and South America network for HIV epidemiology (CCASAnet) is Latin America's
largest observational HIV cohort and provides a rich data source in which to conduct this work. Several
participating cohort sites are located in countries with robust public health infrastructure, including reliable
pharmacy, laboratory, and vital status registries or surveillance systems. In fact, several of these sites are
currently engaged in registry linkage activities with their respective health ministries. CCASAnet also has
extensive experience conducting collaborative research projects addressing engagement in care and risk-
population-defining correlates. Aim 1 of this study will improve patient mortality and outcome ascertainment
through linkage to pharmacy, laboratory, and vital status registries at CCASAnet sites with available regional
and national registries. Aim 2 of this study will be to replicate CCASAnet regional analyses using revised
patient mortality and LTFU data and report findings along with optimal registry search strategies for Brazil,
Mexico, and ...

## Key facts

- **NIH application ID:** 10103774
- **Project number:** 5R21AI145686-02
- **Recipient organization:** VANDERBILT UNIVERSITY MEDICAL CENTER
- **Principal Investigator:** Stephany Norah Duda
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $233,196
- **Award type:** 5
- **Project period:** 2020-02-10 → 2024-01-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10103774

## Citation

> US National Institutes of Health, RePORTER application 10103774, Registry Linkage to Improve Mortality Ascertainment and Assessment of Engagement in Care in Brazil, Mexico, and Peru (5R21AI145686-02). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10103774. Licensed CC0.

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