Abstract B104: Research equity & survivor perspectives to enhance consent and trust: The respect recommendations for biorepository study enrollment practices

Abstract Introduction: Population-level data has consistently shown that Black men demonstrate a 60-80% higher rate of new prostate cancer cases, and 100-120% increased rate of cancer-related death compared with White men, which has persisted over the last five decades. Men of African descent are generally underrepresented in clinical cohorts that help generate data for molecular studies. Poor enrollment in clinical trials is further exacerbated by other factors such as low utilization of radical prostatectomy among Black men, which limits availability of surgical specimens that are foundational to translational science. Methods: With the goal of developing recommendations to inform study enrollment practices, particularly regarding the recruitment of Black patients with prostate cancer, we convened a focus group of Black prostate cancer survivors to evaluate current practices related to biorepository cohort development, including invitations for participation and participant enrollment procedures. The study team presented an overview of current standard enrollment practices for biorepository studies, based on current practice at the team’s institution. Participants then had an hour-long, facilitated discussion about their previous experiences with participation in biospecimen cohorts, patient-centered approaches to cohort development, and future or ongoing use of biospecimens in a way that supports equity and meets community-derived priorities. The discussion was recorded, and a transcript was distilled into recommendations for equity-centered research enrollment practices for biorepository studies. These recommendations were reviewed with the focus group participants, for accuracy and tone. Results: From the focus group data, the study team and participants derived 10 recommendations aimed at building trust and improving the participant experience during biorepository cohort enrollment, for Black prostate cancer survivors. The results are wide-ranging and center on the importance of building trust up front. The recommendations address topics and practices such as the timing of the study invitation, composition of the study team, racial concordance of research staff, and tips for framing and communication of study participation. Participants noted the importance of using plain language summaries, keeping surveys brief, and compensating participants for their time. Conclusions: We have developed a set of survivor-led recommendations that can be put into practice by study teams immediately, to make study enrollment practices more trustworthy, equitable, and accessible for marginalized populations. These results can also be used as a starting point for other study teams that work with community and patient partners from other marginalized populations, to be adapted for use in other settings. Citation Format: Liz Sage, Jenney R. Lee, Sung Min Kim, Yohali Burrola-Mendez, David Anthony, Leanne Woods-Burnham, Burcu Darst, Isla Garraway, Grantley Martelly, Kelvin Nivens, Curtis L. Retic, Simpa S. Salami, Melvin Sweatt, Randy Vince, McKinley Walker, Yaw A. Nyame. Research equity & survivor perspectives to enhance consent and trust: The respect recommendations for biorepository study enrollment practices [abstract]. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr B104.

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Journal
Cancer Epidemiology Biomarkers & Prevention
Published
2025-09-18
DOI
https://doi.org/10.1158/1538-7755.disp25-b104
Primary Topic
Ethics in Clinical Research
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article
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article

Abstract B104: Research equity & survivor perspectives to enhance consent and trust: The respect recommendations for biorepository study enrollment practices

Liz Sage, Leanne Woods-Burnham, Marion Walker, Yaw A. Nyame et al.
Cancer Epidemiology Biomarkers & Prevention
Ethics in Clinical Research
article

Abstract B104: Research equity & survivor perspectives to enhance consent and trust: The respect recommendations for biorepository study enrollment practices

Liz Sage, Leanne Woods-Burnham, Marion Walker, Yaw A. Nyame, Yohali Burrola-Mendez, Burcu F. Darst, Simpa S. Salami, Jenney R. Lee, Randy Vince, Isla P. Garraway, Sung Min Kim, David Anthony, Kelvin Nivens, Curtis L. Retic, Melvin Sweatt, Grantley Martelly
article en

Abstract

Abstract Introduction: Population-level data has consistently shown that Black men demonstrate a 60-80% higher rate of new prostate cancer cases, and 100-120% increased rate of cancer-related death compared with White men, which has persisted over the last five decades. Men of African descent are generally underrepresented in clinical cohorts that help generate data for molecular studies. Poor enrollment in clinical trials is further exacerbated by other factors such as low utilization of radical prostatectomy among Black men, which limits availability of surgical specimens that are foundational to translational science. Methods: With the goal of developing recommendations to inform study enrollment practices, particularly regarding the recruitment of Black patients with prostate cancer, we convened a focus group of Black prostate cancer survivors to evaluate current practices related to biorepository cohort development, including invitations for participation and participant enrollment procedures. The study team presented an overview of current standard enrollment practices for biorepository studies, based on current practice at the team’s institution. Participants then had an hour-long, facilitated discussion about their previous experiences with participation in biospecimen cohorts, patient-centered approaches to cohort development, and future or ongoing use of biospecimens in a way that supports equity and meets community-derived priorities. The discussion was recorded, and a transcript was distilled into recommendations for equity-centered research enrollment practices for biorepository studies. These recommendations were reviewed with the focus group participants, for accuracy and tone. Results: From the focus group data, the study team and participants derived 10 recommendations aimed at building trust and improving the participant experience during biorepository cohort enrollment, for Black prostate cancer survivors. The results are wide-ranging and center on the importance of building trust up front. The recommendations address topics and practices such as the timing of the study invitation, composition of the study team, racial concordance of research staff, and tips for framing and communication of study participation. Participants noted the importance of using plain language summaries, keeping surveys brief, and compensating participants for their time. Conclusions: We have developed a set of survivor-led recommendations that can be put into practice by study teams immediately, to make study enrollment practices more trustworthy, equitable, and accessible for marginalized populations. These results can also be used as a starting point for other study teams that work with community and patient partners from other marginalized populations, to be adapted for use in other settings. Citation Format: Liz Sage, Jenney R. Lee, Sung Min Kim, Yohali Burrola-Mendez, David Anthony, Leanne Woods-Burnham, Burcu Darst, Isla Garraway, Grantley Martelly, Kelvin Nivens, Curtis L. Retic, Simpa S. Salami, Melvin Sweatt, Randy Vince, McKinley Walker, Yaw A. Nyame. Research equity & survivor perspectives to enhance consent and trust: The respect recommendations for biorepository study enrollment practices [abstract]. In: Proceedings of the 18th AACR Conference on the Science of Cancer Health Disparities; 2025 Sep 18-21; Baltimore, MD. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2025;34(9 Suppl):Abstract nr B104.

Cancer Epidemiology Biomarkers & PreventionVol. 34(9_Supplement)
APLA Health (US), University of Washington (US), University of Michigan (US), Pancreatic Cancer Action Network (US), Fred Hutch Cancer Center (US), Michigan Medicine (US), Morehouse School of Medicine (US)
Openalex Percentile: Top 66%
Ethics in Clinical Research
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