Guidance Documents

Updated Recommendations for Collecting Data on Gender Identity, Sex Assigned at Birth, Intersex Status, and Sexual Orientation, August 2023

The Cross Network Transgender and Gender Diverse (TGD) Working Group has updated the recommendations for collecting data on gender identity, sex assigned at birth, intersex status, and sexual orientation. The Working Group first issued data collection recommendations in 2015, updated them in March 2020, and is now issuing a second update to reflect current best practices, including several key recommendations contained in the consensus report by the National Academies of Sciences, Engineering, and Medicine (NASEM), Measuring Sex, Gender Identity, and Sexual Orientation (2022).

Guidance on the Use of Gender-Inclusive HIV Research Practices: Protocol Design, Data Collection, and Data Reporting, November 19, 2019 (updated April 2020) 

Although a comprehensive, five-part training curriculum has been developed, the TGD WG felt that additional guidance would be valuable in helping DAIDS and the NIH-funded HIV/AIDS clinical trials networks implement gender-inclusive practices. 

This guidance highlights a number of different practices that can facilitate inclusiveness, with an emphasis on areas that will help yield greater scientific accuracy as well as a welcoming research environment, such as protocol design, data collection, data reporting across the networks, as well as the use of non-stigmatizing language, and provides needed context and direction to support these efforts. 

NIAID Language Guide 

The NIAID Language Guide was developed to help encourage the use on non-stigmatizing language among NIAID staff.  While the document is primarily intended for internal use, we recognize that it may benefit others throughout the HIV research enterprise. The English version is linked above, but the Guide is also offered in multiple other languages, including: French, Italian, Polish, Portuguese, Spanish, and Thai.