IMPAACT Gender Identity Assessment: Site Survey Results & Implementation

At the IMPAACT Network Annual Meeting held in Washington, DC June 2019, Laura Smith, MPH, IMPAACT Chief Data Manager, co-presented a poster entitled IMPAACT Gender Identity Assessment: Site Survey Results & Implementation along with colleagues Susannah Allison, PhD, Miriam Chernoff PhD, and Rona Siskind, MHS.


The detailed poster outlines the results of both a pilot study to assess the feasibility of collection of gender identity in adolescents in the IMPAACT network, and an IMPAACT site survey to examine resources, cost, discrimination, stigma, and legal concerns associated with collection of gender identity. The pilot study examined the two-step method of collecting sex assigned at birth, and gender identity in children and adolescents, through use of a case report form. The result of the study showed the questions were well understood and easy to answer for most participants in the pilot study. Following the study, a comprehensive survey of all IMPAACT sites was conducted to consider legal issues, safety concerns, and barriers that arise when collecting data on gender identity in the research setting. The majority of IMPAACT sites surveyed felt they would be able to implement the two-step method to obtain information about participants’ gender identity, with staff training and guidance. Based on the pilot study and the survey results, the IMPAACT Management Oversight Group approved implementation of the two-step method for collection of gender identity for future IMPAACT studies.

Poster presented by: Susannah Allison, PhD, Division of AIDS Research, National Institute of Mental Health; Miriam Chernoff PhD, Center for Biostatistics in AIDS Research; Rona Siskind, MHS, Division of AIDS, National Institute of Allergy and Infectious Diseases; Laura Smith, MPH, Frontier Science Foundation.

For more information, or to see the poster, download the poster here.