Resources for Inclusive Community Involvement

Featured on this page are a list of resources covering various aspects of community engagement in clinical research.

Bill of Rights and Responsibilities for HIV Research

The cross-network Bill of Rights and Responsibilities for HIV Research document provides a short list of the rights and responsibilities for participants in a clinical trial. The purpose of this document is to help research participants act on their own behalf and in partnership with study staff. Rights and responsibilities listed in the document are in no particular rank order. This document was developed by the Community Partners Bill of Rights and Responsibilities Working Group for use by sites, at their discretion, along with informed consent forms. Feel free to share this resource with collaborators both within and outside the HIV/AIDS Clinical Trials Networks.

Bill of Rights and Responsibilities for HIV Research


Community Engagement Resource Highlights

Community Partners developed a Community Engagement Resources document highlighting some of the resources available to support community engagement in HIV research.

Community Engagement Resources Flyer

Recursos Para La Comunidad Flyer, Espanol


HIV & AIDS Awareness Days

February 7: National Black HIV/AIDS Awareness Day
2020 statement from the Legacy Project and Women's HIV Research Collaborative

March 10: National Women & Girls HIV/AIDS Awareness Day
2023 infographic from the Women's HIV Research Collaborative
2022 infographic from the Women's HIV Research Collaborative
En español

March 20: National Native HIV/AIDS Awareness Day
2022 infographic


How to Critically (and Quickly) Read a Protocol

Understanding a protocol is important for community members interested in engaging in clinical research. One of the challenges for community and CAB members participating in protocol development is learning how to critically review a protocol from a community perspective. This document was designed and updated to help individuals understand the most important components of a protocol and how to critically (and quickly) read a protocol and provides suggestions to help focus on the most critical areas of the protocol to help save time.

How to Critically Read a Protocol - English
How to Critically Read a Protocol - Spanish
How to Critically Read a Protocol - Portuguese

How to Critically Read a Protocol - Cure Revision - English



Recommendations for Community Engagement

The world of clinical trials research is highly regulated, with an array of documents guiding the conduct of clinical trials research. Policy documents and procedural guidelines, such as Good Clinical Practice (GCP) and Good Clinical Laboratory Practice (GCLP), cover most aspects of clinical research but none of these documents discuss standards for engaging community in the research process.

Community representatives working with the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH increasingly felt that this type of guidance was essential and in 2009 sought to develop recommendations as a way to address good community practice. These recommendations were updated in 2014, and again in 2020, to help research staff and community representatives expand and deepen existing partnerships, and forge new ones, with the ultimate goal of facilitating effective community engagement in all aspects of clinical trials research.

Recommendations for Community Engagement in HIV/AIDS Research Version 3.0
Recommendations for Community Engagement in HIV/AIDS Research Version 3.0 Portuguese Translation
Recommendations for Community Engagement in HIV/AIDS Research Version 3.0 Spanish Translation


Representative Studies Rubric (RSR)

The RSR is a tool developed by the HANC Legacy Project to enhance the representativeness of study populations in clinical research. It consists of a twelve-item questionnaire that examines individual studies for their representation of study populations in terms of age, ethnicity, gender, injection drug use, pregnancy, race, and sex assigned at birth. As of December 2023, the HIV research networks supported by HANC are completing the RSR questionnaire in the development of each new study protocol.

The Representative Studies Rubric (RSR)


Tuberculosis Resources for Communities

As part of the mandate from DAIDS to work with other disease groups, Community Partners (CP) and the TB Community Research Advisors Group (CRAG) are collaborating and working together on a joint TB/HIV project. The Community Research Advisors Group is an international, community-driven advisory body that works to ensure the meaningful representation and engagement of affected communities in research conducted by the U.S. Centers for Disease Control and Prevention's Tuberculosis Trials Consortium. This group of research-literate activists supports a robust, comprehensive and innovative TBTC research agenda that is responsive to community needs as well as scientific priorities. 

One goal of the CP/CRAG partnership is to help educate TB community members and researchers about HIV and to help educate HIV community members and researchers about TB and how the two diseases are connected.

Transgender Resources

See the resources below for conducting gender-inclusive HIV research.

This document was developed in August 2023 by the Cross-Network Transgender and Gender-Diverse Working Group. It outlines best practices for data collection.

Data Collection Recommendations

This brief correspondence, authored by transgender scholars and published in The Lancet, outlines fundamental principles for conducting research with transgender and gender-diverse (TGD) participants. It offers six essential questions for researchers to consider when conducting research with TGD communities.

Research on Transgender People Must Benefit Transgender People

Transgender and gender-diverse (TGD) people are severely underrepresented in HIV research. To address this systemic issue, the HANC Legacy Project partnered with AVAC to devise this scorecard tool, which is intended for use by advocates and researchers alike when envisioning, designing, and/or grading clinical trials for meaningful TGD inclusivity. The Scorecard is based on a combination of AVAC's No Data No More: Manifesto to Align HIV Prevention Research with TGD Realities and the HANC Legacy Project's Representative Studies Rubric. Find the Scorecard below.

Scorecard Tool

The Transgender Training Curriculum for HIV Research was developed by the Cross-Network Transgender and Gender-Diverse Working Group. It includes five training modules that are available as e-learning modules and in-person training tools. Access to the trainings requires a free DAIDS Learning Portal account, which can be created at the link below.

Transgender Training Curriculum for HIV Research