2021 & 2022 Grantee: Sapna Syngal, MD, MPH (principal investigator)
Nicolette Rodriguez, MD, MPH (project lead)
Dana-Farber Cancer Institute
Research Project: Racial/ethnic Equity in GENetic Education, Risk Assessment and TEsting (REGENERATE) Study
Award: 2021 Pancreatic Cancer Action Network Research Project
Award Period: July 1, 2021 – June 30, 2022
Award Extension: 2022 Pancreatic Cancer Action Network Catalyst Award Extension funded by Janssen Research & Development, LLC
Award Period: July 1, 2022 – June 30, 2024
Dr. Sapna Syngal is currently Professor of Medicine at Harvard Medical School, Leader of the Cancer Risk, Prevention and Early Detection Program at Dana-Farber/Harvard Cancer Center, and Director of Research in the Division of Cancer Genetics and Prevention at the Dana-Farber Cancer Institute. The results of her group’s work have helped define the clinical implications of novel etiologies for inherited colon and pancreatic cancer, demonstrated the benefits and complexities of genetic testing for hereditary malignancies, and resulted in new risk assessment tools for inherited colorectal cancer that have become part of standard care. Dr. Syngal received her MD from McGill University and completed her clinical training in Internal Medicine and Gastroenterology at Brigham and Women’s Hospital. She received her MPH from Harvard School of Public Health and completed a research fellowship at the Harvard Education Program in Cancer Prevention. She joined Dana-Farber in 1995.
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.
National guidelines now recommend that all pancreatic cancer patients undergo genetic testing for inherited mutations. This information, along with biomarker testing of their tumor tissue, can help determine which treatment options may be best for them. In addition, first-degree relatives (child, parent or sibling) of someone diagnosed with pancreatic cancer are also recommended to undergo genetic testing for inherited risk if their family member was found to have a mutation or if their results are unknown. If individuals are found to have a genetic change that may predispose them to pancreatic cancer, they may be eligible to be monitored through a surveillance study.
The GENetic Education, Risk Assessment, and TEsting (GENERATE) study’s aim is to evaluate the uptake of genetic testing for people who may be at risk for pancreatic cancer through alternative methods of genetic education. To date, the GENERATE study’s enrollment of individuals who have a relative who’s had pancreatic cancer has been predominantly White/Caucasian (607 out of 632 participants, or 96%).
Racial/ethnic underserved populations continue to be underrepresented among cancer genetics and early cancer screening services. This is critical in pancreatic cancer as 10% of cases involve an inherited genetic alteration. In the United States, Black populations have the highest pancreatic cancer incidence and mortality. Black and Latino/a/x groups also have lower survival outcomes. These disparities could be overcome, in part, with the implementation of systems that increase the accessibility and engagement of pancreatic cancer genetic education, risk assessment, testing and cancer prevention strategies among these populations, which could lead to decreased mortality rates and increased survival outcomes. However, numerous barriers prohibit access to these services. Thus, culturally sensitive, inclusive and innovative methodology is needed for the recruitment and engagement of these groups in pancreatic cancer genetic and cancer screening research.
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. Drs. Syngal and Rodriguez and their colleagues have proposed an approach that will utilize community-based participatory research and invite involvement from key stakeholders through every phase. The study will involve focus groups among Black and Latino/a/x individuals and Black and Latino/a/x community gatekeepers via the Zoom video conferencing platform, to evaluate knowledge, awareness and perceived facilitators and barriers to obtaining genetic testing and cancer screening services. The team will also investigate participants’ perceived internet literacy for accessing health information, cancer worry/risk perception and medical mistrust.
The ultimate 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.
Project Overview: 2022 Extension
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.