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.
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.
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
Long-Acting Antiretroviral Injectables Info Sheet
The Legacy Project Working Group has produced an information sheet that includes the recent developments on Long-Acting Antiretroviral Injectables (LAIs) in different formats for use in social media outlets or to print.
Long-Acting Antiretroviral Injectables Brochure (horizontal format)
Long-Acting Antiretroviral Injectables Brochure (vertical format)
Long-Acting Antiretroviral Injectables for Treatment (flyer)
Long-Acting Antiretroviral Injectables for Prevention (flyer)
Folleto sobre Antiretrovirales Inyectables de Acción Prolongada
Volante sobre Antiretrovirales Inyectables de Acción Prolongada para Tratamiento
Volante sobre Antiretrovirales Inyectables de Acción Prolongada para Prevención
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. From December 2023 to January 2025, the HIV research networks supported by HANC were completing the RSR questionnaire in the development of each new study protocol.
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.
CDC- Slide Set — Guidelines for Preventing the Transmission of M. tuberculosis in Health-Care Settings, 2005
Critical Path to New TB Drug Regimens
Stop TB Partnership
TB Community Research Advisory Group (CRAG)
TB Online
TB Quick Facts
TB/HIV Activist Toolkit slide set
The Tuberculosis Clinical Diagnostics Research Consortium (CDRC)
Vaccine Literacy Library (IAVI)
WHO — Treatment of tuberculosis: guidelines for national programmes
This document was developed in August 2023 by the Cross-Network Transgender and Gender-Diverse Working Group. It outlines best practices for data collection.
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 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. Access the Scorecard below.