Cancer causes & control : CCC · 2026
Bridging gaps in breast cancer clinical trial enrollment: insights from a community-based research registry initiative.
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Eisenstein Ethan N, Sleiman Marcelo M, Statman Muriel R, Fleischmann Adina, Noel Marcus, Tercyak Kenneth P
Аннотация
OBJECTIVE: Cancer research registries are critical for ensuring representative participation in clinical trials. However, registries based primarily in hospitals may under-enroll women and other populations who experience structural, logistical, cultural, and informational barriers to care and research participation. Community-based organizations (CBOs) may help address this gap by developing registries that engage diverse populations of women at increased risk for and surviving with breast cancer more directly. The purpose of this study was to examine demographic, clinical, and organizational (i.e., engagement related) factors associated with women's interest in joining a CBO-led breast cancer research registry to support clinical trial access and representation.
METHODS: Secondary analyses were conducted on repeated cross-sectional surveys (2022-2024) administered to women who contacted a national breast cancer-focused CBO for information and support (n=2,389). Measured variables included demographics, cancer risk, quality of life, patient navigation, empowerment, CBO care quality, social media use, and interest in registry participation; bivariate tests, ANOVAs, and MANCOVAs were used to assess associations.
RESULTS: Nearly half of women expressed interest in joining the registry (46.2%), while 17.0% were unsure and 36.8% declined. Interest was greater among younger women, those at higher cancer risk, and those who had a more beneficial experience with the CBO (e.g., better patient navigation, greater empowerment, higher care quality). Greater digital engagement with the CBO (e.g., webinar attendance, frequent social media use, and viewing the CBO's social media content) was also strongly associated with registry interest (p<0.05).
CONCLUSIONS: CBOs have a unique role in fostering breast cancer research participation. Specific digital approaches (i.e., educational webinars, regularly updated social media content, online pathways that allow interested or uncertain individuals to request follow-up) may extend trusted CBO relationships into registry recruitment and help broaden representation in clinical trials.
METHODS: Secondary analyses were conducted on repeated cross-sectional surveys (2022-2024) administered to women who contacted a national breast cancer-focused CBO for information and support (n=2,389). Measured variables included demographics, cancer risk, quality of life, patient navigation, empowerment, CBO care quality, social media use, and interest in registry participation; bivariate tests, ANOVAs, and MANCOVAs were used to assess associations.
RESULTS: Nearly half of women expressed interest in joining the registry (46.2%), while 17.0% were unsure and 36.8% declined. Interest was greater among younger women, those at higher cancer risk, and those who had a more beneficial experience with the CBO (e.g., better patient navigation, greater empowerment, higher care quality). Greater digital engagement with the CBO (e.g., webinar attendance, frequent social media use, and viewing the CBO's social media content) was also strongly associated with registry interest (p<0.05).
CONCLUSIONS: CBOs have a unique role in fostering breast cancer research participation. Specific digital approaches (i.e., educational webinars, regularly updated social media content, online pathways that allow interested or uncertain individuals to request follow-up) may extend trusted CBO relationships into registry recruitment and help broaden representation in clinical trials.