162578 Meeting our children's needs: Community-driven HIV/AIDS research partnership

Monday, November 5, 2007: 5:30 PM

Claire R. Schuster, MPH , International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) Operations Center, Social & Scientific Systems, Inc., Silver Spring, MD
Dorothy Shaw , International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) Community Advisory Board, Social & Scientific Systems, Inc., Silver Spring, MD
Eva Janzen Powell , International Maternal Pediatric Adolescent AIDS Clinical Trials (IMPAACT) Community Advisory Board, Social & Scientific Systems, Inc., Silver Spring, MD
Sharon Nachman, MD , SUNY Health Science Center at Stony Brook, International Maternal Pediatric Adolescent AIDS Clinical Trials Group (IMPAACT), Stony Brook, NY
Issues: Community partnerships are essential to the development of relevant, meaningful, ethical, and successful clinical trials. In an international pediatric HIV/AIDS research network, community members collaborate with investigators to develop studies that meet their children's needs.

Description: This case study demonstrates how community members identified a health issue affecting their children and partnered with researchers to develop a study to address their concerns. Families noticed psychiatric issues among their HIV-positive children. They wanted to know if these issues resulted from neurological, mental, behavioral, cognitive, or environmental causes, or possibly HIV infection and/or antiretroviral therapy. In 2002, community members made psychiatric issues a network priority and forged key partnerships to support this important research.

Lessons Learned: This community-driven partnership resulted in a high-priority study among families living with HIV/AIDS. In 2005, the study opened to enrollment. Five-hundred eighty-two participants enrolled in the study at 29 sites across the United States. The study marks a successful partnership between the community, researchers, and different research agencies.

This partnership empowered the Community to shape pediatric HIV/AIDS research to meet their children's needs. They learned that their voices could result in action. The investigators learned the value of community-driven research even when it challenges their traditional research paradigm.

Recommendations: This case study highlights the importance of community involvement in HIV/AIDS research. The community will update their scientific priorities annually and participate in the development of the research network's agenda and clinical trials. This partnership will ensure the development of studies that respond to community priorities.

Learning Objectives:
1. Explain how families partner with researchers to develop pediatric HIV/AIDS clinical trials 2. Describe the impact of community partnerships on pediatric HIV/AIDS research

Keywords: Community-Based Partnership, Pediatrics

Presenting author's disclosure statement:

Any relevant financial relationships? No
Any institutionally-contracted trials related to this submission?

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.