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Articles linked to this work by shared authors, journal, and citation graph.

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HIV acquisitions, safety, and pharmacokinetics of lenacapavir for HIV pre-exposure prophylaxis in pregnant and lactating women (PURPOSE 1): a substudy of a phase 3, randomised controlled trial.

The lancet. HIV·2026
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Related Experiment Video

Updated: Jun 19, 2025

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Using publicly available, interactive epidemiological dashboards: an innovative approach to sharing data from the

Kevin Footer1, Camille M Lake1, Joshua R Porter1

  • 1Office of Cyber Infrastructure & Computational Biology, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Rockville, MD 20892, United States.

JAMIA Open
|July 24, 2024
PubMed
Summary

Publicly sharing de-identified HIV surveillance data via a dashboard aids research. This approach protects privacy while enabling new discoveries and collaborations in disease prevention and treatment.

Keywords:
Rakai Community Cohort Study (RCCS)Rakai Health Sciences Program (RHSP)dashboardde-identificationhuman immunodeficiency virus (HIV)

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Area of Science:

  • Epidemiology
  • Public Health
  • Data Science

Background:

  • Open-access biomedical data sharing accelerates research but poses privacy and data integrity challenges.
  • Protecting participant privacy and ensuring appropriate data use are critical for ethical data sharing.
  • Acknowledging all researchers' contributions is essential in collaborative data initiatives.

Purpose of the Study:

  • To present a novel approach for de-identified biomedical data sharing using a public dashboard.
  • To address challenges in data sharing, including privacy protection and appropriate data use.
  • To leverage a large HIV surveillance cohort for public data exploration and hypothesis generation.

Main Methods:

  • Utilized de-identified, aggregated participant data from the Rakai Community Cohort Study (RCCS) in Uganda.
  • Integrated data into a centralized data mart for a comprehensive data management strategy.
  • Developed a publicly accessible, Protected Health Information (PHI)-secured visualization dashboard.

Main Results:

  • Demonstrated the dashboard's capability to generate hypotheses through two case studies.
  • Hypothesized differing impacts of HIV prevention strategies (ART, circumcision) based on marital status.
  • Showcased the comparative success of ART versus circumcision as interventions in specific communities.

Conclusions:

  • Public-facing dashboards democratize large-scale, anonymized epidemiological data.
  • Facilitates research data exploration and enhances the reproducibility of findings.
  • Drives scientific discovery and collaboration by enabling public data interaction and hypothesis formation.