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Published on: May 30, 2013
Engaging Transgender People in NIH-Funded HIV/AIDS Clinical Trials Research
Rona L Siskind1, Michele Andrasik, Shelly T Karuna
1*Division of AIDS, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD; †Fred Hutchinson Cancer Research Center, HIV Vaccine Trials Network, Seattle, WA; ‡Microbicide Trials Network, Pittsburgh, PA; §Bridge HIV, San Francisco Department of Public Health, San Francisco, CA; ‖FHI360, HIV Prevention Trials Network, Durham, NC; and ¶University of Michigan School of Public Health, Ann Arbor, MI.
National Institutes of Health-funded HIV/AIDS networks are improving engagement with transgender (TG) individuals in research. Strategies include building partnerships, revising data collection, and enhancing cultural competency to improve TG health outcomes.
Area of Science:
- Public Health
- Health Services Research
- Clinical Trials
Background:
- The National Institutes of Health (NIH) identified a need to improve understanding of lesbian, gay, bisexual, and transgender (LGBT) health in the U.S.
- A key Institute of Medicine report highlighted the necessity for more LGBT health knowledge, better research methodologies, and enhanced physician/researcher training.
- Several NIH-funded HIV/AIDS clinical trials networks have prioritized engaging transgender individuals in research.
Purpose of the Study:
- To describe the approaches used by NIH-funded HIV/AIDS clinical trials networks to engage transgender (TG) individuals in research.
- To identify strategies for improving the inclusion and participation of TG individuals in health research.
- To address the specific research needs of the TG community, particularly concerning HIV/AIDS.
Main Methods:
- Networks established partnerships and advisory groups to gain input from the TG community on research plans.
- Data collection forms were revised to include the 2-step method for collecting sex at birth and gender identity.
- Research protocols and policies were updated to ensure appropriateness for TG participant inclusion.
- Training programs were developed to enhance cultural sensitivity among research staff.
Main Results:
- Multiple NIH-funded HIV/AIDS networks have implemented strategies to engage TG individuals in clinical research.
- Partnership building and community input have been crucial for developing trust and relevant research plans.
- Revisions to data collection and protocols facilitate more accurate and inclusive research.
- Enhanced cultural sensitivity training and resources support research staff.
Conclusions:
- NIH-funded HIV/AIDS networks are actively working to improve the engagement of transgender individuals in research.
- Collaborative approaches and methodological adaptations are essential for inclusive and effective research with TG populations.
- Continued focus on TG-specific research needs is vital for advancing the health of transgender individuals, especially in the context of HIV/AIDS.
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