2022 GRANTEE: Nicolette Rodriguez, MD, MPH
Brigham and Women’s Hospital
Research Project: Racial/ethnic Equity in GENetic Education, Risk Assessment and TEsting (REGENERATE) Study
Award: 2022 Pancreatic Cancer Action Network Catalyst Award funded by a generous foundation
Award Period: July 1, 2022 – June 30, 2024
Dr. Nicolette Juliana Rodriguez is an Instructor of Medicine at Harvard Medical School and Co-Director of Fellowship Initiatives for Trainees Underrepresented in Medicine (URiM) in the Department of Medicine at Brigham and Women’s Hospital. She is also an early career investigator in the Division of Cancer Genetics and Prevention at Dana-Farber Cancer Institute under the mentorship of Dr. Syngal. Her clinical and research interests focus on the intersection between healthcare disparities, cancer genetics, and early cancer interception strategies. Specifically, she aims to thoughtfully evaluate racial/ethnic equity in cancer genetics and prevention efforts to improve access to genetic education, testing, and preventative cancer care among Black and Latino/a/x communities. Dr. Rodriguez earned her MD and MPH from the Warren Alpert Medical School of Brown University and Brown University School of Public Health, respectively. Prior to joining Brigham and Women’s Hospital and Dana-Farber, she completed her internship and residency training in internal medicine at Yale-New Haven Hospital.
Drs. Sapna Syngal (principal investigator) and Nicolette Juliana Rodriguez (project lead) received PanCAN funding in 2021 to conduct the first phase of their Racial/ethnic Equity in GENetic Education, Risk Assessment and TEsting (REGENERATE) study. Both Drs. Syngal and Rodriguez have been awarded additional funding from PanCAN to pursue phases two and three of REGENERATE in 2022-2023.
This study aims to improve access to genetic testing and awareness of early pancreatic cancer prevention strategies among at risk Black and Latino/a/x families. This three-phase approach will support ongoing assessment throughout, utilizing principles from community-based participatory research by inviting involvement from key stakeholders through every phase. Phase one, which was funded by PanCAN in 2021, involves focus groups among Black and Latino/a/x individuals and Black and Latino/a/x community leaders via the Zoom video conferencing platform, to evaluate knowledge, awareness and perceived facilitators and barriers to obtaining genetic testing and cancer screening services. Participants’ perceived internet literacy for accessing health information, cancer worry/risk perception and medical mistrust are also being investigated. Phases two and three of REGENERATE will be funded this year.
Phase two will involve a series of usability testing interviews, designed to assess the usability of the pancreatic cancer online communication system that participants engage with in order to receive pancreatic cancer genetic education, testing and early cancer screening information. Based on usability testing results, the team will make modifications to the study website, social media outreach methods and materials, survey data and the REDcap database to ensure linguistic appropriateness (English/Spanish language and at an appropriate reading level), inclusion of genetic education and testing information requested by the target populations, as well as incorporating diverse racial/ethnic patient care imagery.
Finally, phase three will implement the resulting online communication system for beta testing. In phase three, Drs. Syngal and Rodriguez and the REGENERATE team plan to partner with a company that utilizes participant-focused technology to create a patient-facing mobile and digital infrastructure for use in clinical research. Design of a patient-facing online infrastructure of REGENERATE study materials will be critical to upscaling REGENERATE to a larger study, and a key step to leveraging remote healthcare services and resources as a tool to improving healthcare equity in pancreatic cancer and beyond.
This critical foundational work will allow REGENERATE to upscale into a transformative cluster randomized controlled trial. The goal is to enable Black and Latino/a/x communities to have access to virtual pancreatic cancer interception approaches while also considering that this modality of genetic education and testing could be applied to other hereditary cancer settings, improving access to preventative care more broadly.