Published Research

Fight CRC’s patient education and research team and committed medical experts aim to lead the path to a cure for colorectal cancer through our research.

Colorectal Cancer and Research

The Path to a Cure

Fight CRC’s patient education and research team, along with committed medical experts, aims to lead the path to a cure for colorectal cancer. A vital part of this is funding ground-breaking research through donations and playing key roles in research ourselves. Our expert workgroups are essential to this process. Explore our research efforts below to see how Fight CRC is leading the path to a cure.

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Early-Age Onset Colorectal Cancer

Emergency Room Becomes Critical Link in Detection of Early-Onset Colorectal Cancer


Early-onset colorectal cancer (CRC) rates have been increasing worldwide, with roughly 18,000 people under the age of 50 projected to be diagnosed in the U.S. this year alone. Possible factors driving this trend include a combination of diet and lifestyle habits, lack of preventive screening among younger people, and a behavioral tendency among younger, healthier people to ignore symptoms until they become serious. Several recent events have put a spotlight on these issues. Notably, the U.S. Preventive Services Task Force lowered its recommended age for routine CRC screening to 45 from 50. This brings the official U.S. guidance in line with recommendations from the American Cancer Society and should make it easier for younger Americans to receive preventive care. Mainstream awareness of colon cancer risk among younger generations also increased substantially following the death of acclaimed actor Chadwick Boseman, who succumbed to stage 4 colon cancer at age 43 in August 2020. Despite this increased visibility and widespread accessibility of highly effective preventive screening, many people do not receive routine screening and many others ignore dangerous symptoms until the disease has already progressed. This has been a particularly challenging issue throughout the COVID-19 pandemic. According to an analysis published by Komodo Health and Fight Colorectal Cancer (Fight CRC) in May 2020, nationwide colonoscopy screenings and biopsies fell 90% during the height of the pandemic. Emergency Room Becomes Critical Link in Detection of Early-Onset Colorectal Cancer Research Brief | June 2021 2 TM In order to dig deeper into patient behaviors and patterns of care associated with early-onset CRC, Komodo Health and Fight CRC evaluated the patient journeys of colorectal cancer patients in three distinct age groups: under age 35, 35–49, and 50+. The analysis identifies the most common red flag symptoms associated with a subsequent CRC diagnosis, the types of healthcare providers most likely to see first red flag symptoms, the total time-to-treatment from presentation of initial symptom to eventual CRC diagnosis and treatment, and the frequency of metastases between age groups. It also draws on anecdotal stories from Fight CRC’s community of colorectal cancer patients to examine their first-hand experiences with the U.S. healthcare system.

Colorectal Cancer in the Young: Epidemiology, Prevention, Management

Rebecca L. Siegel, Christopher Dennis Jakubowski, Stacey A. Fedewa, Anjee Davis, and Nilofer S. Azad. (2020). American Society of Clinical Oncology Educational Book 2020 :40, e75-e88.


Colorectal cancer (CRC) incidence rates in the United States overall have declined since the mid-1980s because of changing patterns in risk factors (e.g., decreased smoking) and increases in screening. However, this progress is increasingly confined to older adults. CRC occurrence has been on the rise in patients younger than age 50, often referred to as early-onset disease, since the mid-1990s. Young patients are more often diagnosed at an advanced stage and with rectal disease than their older counterparts, and they have numerous other unique challenges across the cancer management continuum. For example, young patients are less likely than older patients to have a usual source of health care; often need a more complex treatment protocol to preserve fertility and sexual function; are at higher risk of long-term and late effects, including subsequent primary malignancies; and more often suffer medical financial hardship. Diagnosis is often delayed because of provider- and patient-related factors, and clinicians must have a high index of suspicion if young patients present with rectal bleeding or changes in bowel habits. Educating primary care providers and the larger population on the increasing incidence and characteristic symptoms is paramount. Morbidity can further be averted by increasing awareness of the criteria for early screening, which include a family history of CRC or polyps and a genetic predisposition.

Prioritizing Actionable Steps to Decrease the Incidence of Early Age Colorectal Cancer

Dwyer, A., Warroll, S., Garcia, R. (2019). Prioritizing Actionable Steps to Decrease the Incidence of Early Age Colorectal Cancer. Gastro, 158(4), 798-801.


Early age onset colorectal cancer (EAO CRC) is an undeniable health priority that must be addressed on an international scale; data has indicated that those who were born in the 1990s have twice the risk of colon cancer and 4 times the risk of rectal cancer than adults born in the 1950s. In 2018, the American Cancer Society (ACS) lowered their screening guidelines to age 45 from 50 based on modeling studies conducted, as the rates of CRC among 45-year-olds are comparable with those among 50-year-olds in 1993. Current strategies for medical management and screening for those under age 50 exist for those who are at increased or high risk. Within this population, screening rates are <40% for those that are 40–49 years old, and even lower for those who are <40. Based on a study published in July 2019, on average 294 days passed between initial symptoms and diagnosis for young patients with CRC, suggesting the need for greater awareness in the patient and provider community.

A Summary of the Fight Colorectal Cancer Working Meeting: Exploring Risk Factors and Etiology of Sporadic Early-Age Onset Colorectal Cancer

Andrea J. Dwyer, Caitlin C. Murphy, C. Richard Boland, Reese Garcia, Heather Hampel, Paul Limburg, Jan Lowery, Ann G. Zauber, Stephen Waring, Sharyn Worrall, Jose Perea, Rebecca Siegel, Jeffrey Lee, Christine Molmenti, Cynthia L. Sears, Phillip Buckhaults, Richard Hayes, Hisham Hussan, Noel de Miranda, Claire Palles, Luis Diaz, Mingyang Song, Andrea Cercek, Christopher H. Lieu, Swati G. Patel, Jordan J. Karlitz,  Yin Cao, Josh Demb, Patrick Blatchford, Betsy Risendal, Elsa Weltzien, Anil Wali, Phil Daschner, Holli Loomans-Kropp, R. Flores, Caleb L. Levell, Karen Wehling, Jessica Martin, Curt Pesmen, Violet Kuchar, Ryan Soisson, Anjee Davis, and Dennis Ahnen. (2019). Gastro, 157(2), 280-288.

The Impact of the Rising Colorectal Cancer Incidence in Young Adults on the optimal Age to Start Screening: Microsimulation Analysis I to Inform the American Cancer Society Colorectal Cancer Screening Guideline

Peterse, E., Meester, R., Siegel, R. L., Chen, J. C., Dwyer, A., Ahnen, D. J., Smith, R. A., Zauber, A. G., & Lansdorp-Vogelaar, I. (2018). The impact of the rising colorectal cancer incidence in young adults on the optimal age to start screening: Microsimulation analysis I to inform the American Cancer Society colorectal cancer screening guideline. Cancer, 124(14), 2964–2973.


In 2016, the Microsimulation Screening Analysis‐Colon (MISCAN‐Colon) model was used to inform the US Preventive Services Task Force colorectal cancer (CRC) screening guidelines. In this study, 1 of 2 microsimulation analyses to inform the update of the American Cancer Society CRC screening guideline, the authors re‐evaluated the optimal screening strategies in light of the increase in CRC diagnosed in young adults.

Financial Burden and Quality of Life among Early-onset Colorectal Cancer Survivors: A Qualitative Analysis

Blum-Barnett, E., Madrid, S., Burnett-Hartman, A., Mueller, S. R., McMullen, C. K., Dwyer, A., & Feigelson, H. S. (2019). Financial burden and quality of life among early-onset colorectal cancer survivors: A qualitative analysis. Health expectations : an international journal of public participation in health care and health policy, 22(5), 1050–1057.


Colorectal cancer (CRC) diagnosed at ages <50 years old (early‐onset CRC) has been increasing in the United States, resulting in a growing number of early‐onset CRC survivors who may face significant financial and quality of life (QOL) challenges.


Addressing Survivorship in Cancer Care

James McCanney JD, Katy Winckworth-Prejsnar MPH, Alyssa A. Schatz MSW, Elizabeth A. Nardi MS, Andrea J. Dwyer, Christopher Lieu MD, Yelak Biru, and Robert W. Carlson MD. (2018). Journal of the National Comprehensive Cancer Network, 16(7), 801-806.


Advances in early detection and improved treatment during the past 30 years has led to a new issue in the oncology landscape: the unmet needs of the cancer survivor community. As of January 2017, there were >16.8 million Americans with a history of cancer, a figure that is estimated to increase to >20 million by 2026. For those living through and beyond a cancer diagnosis, the disease can affect an individual’s physical, psychological, psychosocial, social, economic, and spiritual well-being. The cancer survivor population might experience varying chronic side effects of treatment based on cancer type, specific treatments, and individual characteristics. Moreover, there is an increasing recognition of other common and substantial consequences of cancer and its treatment, including challenges associated with resuming activities of daily living and reintegration into the workforce. Navigating the survivorship journey is a complex process, requiring tools and processes that facilitate effective communication between patients, providers, caregivers, and the extended care team. Beyond the growing body of scientific literature and evidence-based tools for cancer survivorship, many questions remain regarding how to assess, treat, and prevent survivorship-related problems to promote high-quality, patient-centered cancer care.

To address the unmet needs of the cancer survivorship community, NCCN convened the NCCN Patient Advocacy Summit: Addressing Survivorship in Cancer Care in Washington, DC, on December 1, 2017. In preparation for the summit, NCCN conducted an environmental scan of existing and emerging aspects of survivorship cancer care through stakeholder meetings with survivors and patient advocacy groups to discuss needs, opportunities, and challenges in providing high-quality, patient-centered cancer survivorship care. The corresponding Patient Advocacy Summit featured stakeholders from the environmental scan and included survivorship discussions by the multistakeholder, multidisciplinary larger cancer care community.

Responding to Priorities of Unmet Needs for Those Affected by Colorectal Cancer (CRC): Considerations from a Series of Nominal Group Technique Sessions

Worrall SF, Dwyer AJ, Garcia RM, McAbee KE, Davis AQ. Priorities of Unmet Needs for Those Affected by Colorectal Cancer: Considerations From a Series of Nominal Group Technique Sessions. J Natl Compr Canc Netw. 2021 Feb 19:1-7. doi: 10.6004/jnccn.2020.7655


Colorectal cancer (CRC) is the third most common cancer among men and women in the United States. Patients and survivors experience a range of challenges, including anxiety, financial issues, long-term adverse effects, and more. The intent of this project was to assess the needs of the CRC community directly from survivors and their caregivers and to lay a foundation for ongoing support.

Adopting Consensus Terms for Testing in Precision Medicine

Despite the well-understood benefits of biomarker and genetic testing in precision medicine, uptake remains low, particularly for patients with low socioeconomic status and minority ethnic backgrounds. Patients report having limited familiarity with testing terminology and may not be able to accurately explain testing’s role in treatment decisions. Patient confusion and lack of understanding is exacerbated by a multiplicity of overlapping terms used in communicating about testing. A LUNGevity Foundation–led working group composed of five professional societies, 23 patient advocacy groups, and 19 industry members assessed and recommended specific terms for communicating with patients on testing for tumor characteristics and germline mutations.

Citation: DOI: 10.1200/PO.21.00027 JCO Precision Oncology no. 5 (2021) 1563-1567. Published online October 6, 2021.

Patient Advocacy

The Current Landscape of Research Advocacy and Education for Patients with Colorectal Cancer

Reese M. Garcia, MPH, Andrea J. Dwyer, BS, Sharyn Worrall, MPH, Keavy McAbee, MPH, Anjelica Q. Davis, MPPA

Opinion statement
Research advocacy is an evolving concept and should be tailored for the colorectal cancer research community. Research advocacy training and evaluation must be designed for the patient community with their insight included at each step of engagement, training, and implementation. Patient advocates bring a great deal of expertise to the research review process, but it is important to ensure that their insight is appropriately placed, and they bring an appropriate orientation to the research process as the most informed patient. This can be accomplished in part by providing advocates with the proper training, employing universal core competencies, and applying principles of adult learning. Additionally, the research community, advocacy organizations, and industry partners must understand the need to diversify the voices that are being leveraged to guide research, recognizing the importance of adequate mental health tools and compensation commensurate with their experience. As a community, it is necessary that we create and implement training programs, as well as evaluate and measure their impact to continually improve and tailor the delivery of this specific education. Research advocacy has become a necessity to the field, and when implemented effectively, research advocates can have a significant impact on the delivery of health care research, improving health outcomes for all those affected by colorectal cancer.

Patient engagement and advocacy considerations in development and implementation of a multicancer early detection program

Schear, RMHoyos, JMDavis, AQWoods, PLPoblete, SRichardson, RNFinney Rutten, LJ. Cancer. 2022.


Advocacy organizations are poised to ensure that patients’ needs and preferences inform the development, planning, and implementation of multicancer early detection technologies. Engaging patients and cancer advocacy organizations throughout the research, development, and implementation of multicancer early detection technologies is critical to optimize public health impact and health equity.

Health Care Improvement And Survivorship Priorities Of Colorectal Cancer Survivors: Findings from the PORTAL Colorectal Cancer Cohort Survey

Carmit McMullen, Joanna Bulkley,  Douglas A. Corley, Sarah Madrid, Anjelica Q. Davis, Rose Hesselbrock, Florence Kurtilla, Charles K. Anderson, David Arterburn, Carol P. Somkin, Pamala A. Pawloski, Nirupa R. Ghai, and Heather Spencer Feigelson. (2019). Supportive Care in Cancer, 27, 147-156.


Anjee Davis, Fight CRC president, and Flo Kurttila, Fight CRC research advocate, were recently published in the journal Supportive Care in Cancer for their contributions to the article “Health care improvement and survivorship priorities of colorectal cancer survivors: findings from the PORTAL colorectal cancer cohort survey.”  We believe in the power of patient voices in research and will continue to infuse the collective patient perspective into all aspects of our work.


A Blueprint to Advance Colorectal Cancer Immunotherapies

Le DT, Hubbard-Lucey VM, Morse MA, et al. A Blueprint to Advance Colorectal Cancer Immunotherapies. Cancer Immunol Res. 2017;5(11):942-949.


Immunotherapy is rapidly becoming a standard of care for many cancers. However, colorectal cancer had been generally resistant to immunotherapy, despite features in common with sensitive tumors. Observations of substantial clinical activity for checkpoint blockade in colorectal cancers with defective mismatch repair (microsatellite instability-high tumors) have reignited interest in the search for immunotherapies that could be extended to the larger microsatellite stable (MSS) population. The Cancer Research Institute and Fight Colorectal Cancer convened a group of scientists, clinicians, advocates, and industry experts in colorectal cancer and immunotherapy to compile ongoing research efforts, identify gaps in translational and clinical research, and provide a blueprint to advance immunotherapy. We identified lack of a T-cell inflamed phenotype (due to inadequate T-cell infiltration, inadequate T-cell activation, or T-cell suppression) as a broad potential explanation for failure of checkpoint blockade in MSS. The specific cellular and molecular underpinnings for these various mechanisms are unclear. Whether biomarkers with prognostic value, such as the immunoscores and IFN signatures, would also predict benefit for immunotherapies in MSS colon cancer is unknown, but if so, these and other biomarkers for measuring the potential for an immune response in patients with colorectal cancer will need to be incorporated into clinical guidelines. We have proposed a framework for research to identify immunologic factors that may be modulated to improve immunotherapy for colorectal cancer patients, with the goal that the biomarkers and treatment strategies identified will become part of the routine management of colorectal cancer.

Precision Medicine

Using Consistent Terms in Precision Medicine to Eliminate Patient Confusion

Nikki A. Martin, Sue J. Friedman, Claire Saxton, Ronit Yarden, Stacie Lindsey, Erica Kuhn, Janine Guglielmino, Reese Garcia, Cassadie Moravek, Deborah A. Zajchowski, Andrea K. Miyahira, Denisse Montoya, Christine Verini, Janelle Schrag, Victor Gonzalez, Gillian Hooker, Cynthia Bens, Beth Davison, Marcia K. Horn; LUNGevity Foundation, Bethesda, MD; FORCE-Facing our Risk of Cancer Empowered, Tampa, FL; Cancer Support Community, Research and Training Institute, Washington, DC; Colorectal Cancer Alliance, Washington, DC; The Cholangiocarcinoma Foundation, Salt Lake City, UT; Susan G. Komen, Dallas, TX; Living Beyond Breast Cancer, Bala Cynwyd, PA; Fight Colorectal Cancer, Springfield, MO; Pancreatic Cancer Action Network, Manhattan Beach, CA; Onc Consult Svcs, San Francisco, CA; Prostate Cancer Foundation, Santa Monica, CA; The Life Raft Group, Wayne, NJ; CancerCare, New York, NY; Association of Community Cancer Centers, Rockville, MD; Lymphoma Research Foundation, New York, NY; Concert Genetics, Franklin, TN; Personalized Medicine Coalition, Washington DC, DC; LLS, St Augustine, FL; Int’l Cancer Advocacy Network, Phoenix, AZ


Biomarker testing has advanced precision medicine in cancer. However, not all eligible patients benefit from biomarker-driven therapies due to suboptimal testing rates. A working group of 20 patient advocacy groups representing solid/hematologic malignancies, three professional societies, and 18 pharmaceutical and diagnostics companies identified patient confusion inconsistent testing terms as a possible contributing factor to biomarker testing underutilization. The group aimed to address patients’ confusion by identifying and adopting consistent, plain language terms for biomarker and germline genetic testing that are applicable across cancer types.

Incorporating Patient Advocates in Oncology Clinical Development: Lessons Learned From a Novel Pilot Program

Wendy Selig, MSJ, Ian Banks, MD, Anjelica Davis, MPPA, Gissoo DeCotiis, MBA, Ryan Hohman, JD, and Lisa Schlager. 2018. Sage, 2018.


The advent of patient-focused drug development (PFDD) has underscored the priority of engaging the “voice of the patient” in therapy development. Industry sponsors are working to enhance engagement of patients early, particularly within decision making for design and execution of clinical trials. This trend is especially significant within oncology, as industry leaders partner with patient advocacy organizations, individual patients, and clinicians to enhance patient-centricity. These partnerships often require a willingness to change attitudes, approaches, and processes to reshape traditional models of drug development. In 2016, Bayer Oncology launched a pilot program called the Patient Advocate Advisory Council (PAAC), to design and execute a program whereby patients join clinical development teams. The PAAC, composed of experienced patient advocates from the US and Europe, worked closely with company leaders to design and execute a pilot in an ongoing clinical development program. The PAAC and Bayer teams have identified important learnings from the first phase of the program, emphasizing earlier engagement of patient advisors, launching the enhanced training platform, and recruiting additional PAAC members to expand the initiative’s reach across the cancer community. A critical success factor is having champions for patient engagement within the company to ensure that activities are streamlined and standardized as patient engagement becomes more common. This is particularly important given that patient engagement should be a long-term investment with sufficient and sustained resources. PAAC members and Bayer have committed to sharing learnings, to advance opportunities for successful patient engagement in drug development throughout the oncology therapeutic landscape.


Community health workers and non-clinical patient navigators: A critical COVID-19 pandemic workforce

Kristen J. Wells, Andrea J. Dwyer, Elizabeth Calhoun, Patricia A. Valverde,
Community health workers and non-clinical patient navigators: A critical COVID-19 pandemic workforce, Preventive Medicine, Volume 146, 2021.

The COVID-19 pandemic has resulted in substantial morbidity and mortality and challenged public health agencies and healthcare systems worldwide. In the U.S., physical distancing orders and other restrictions have had severe economic and societal consequences. Populations already vulnerable in the United States have experienced worse COVID-19 health outcomes. The World Health Organization has made recommendations to engage at risk populations and communicate accurate information about risk and prevention; to conduct contract tracing; and to support those affected by COVID-19. This Commentary highlights the ways in which an existing and cost-effective, but underutilized workforce, community health workers and non-clinical patient navigators, should be deployed to address the COVID-19 pandemic. Community health workers and non-clinical patient navigators have skills in community engagement and health communication and are able to gain the trust of vulnerable communities. Furthermore, many community health workers and non-clinical patient navigators have skills in assisting community members with meeting basic needs and with navigating public health and healthcare systems. Members of this workforce are more than prepared to conduct contact tracing. State, local, tribal, and territorial public health agencies and healthcare systems should be collaborating with national, state, and local organizations that represent and employ CHWs/non-clinical patient navigators to determine how to better mobilize this workforce to address the COVID-19 pandemic. Furthermore, Congress, the Centers for Medicare & Medicaid Services (CMS), and individual states need to adopt policies to sustainably fund their critically needed services in the long term.

Landscape of COVID-19 vaccine uptake in the colorectal cancer community: Responding to community needs.
Andrea Dwyer, Michael Marosits, Elsa Weltzien, Reese Garcia, Anjee Davis. Landscape of COVID-19 vaccine uptake in the colorectal cancer community: Responding to community needs. J Clin Oncol 39, 2021 (suppl 15; abstr e15577)

The novel coronavirus (COVID-19) has caused numerous disruptions across the cancer prevention and treatment landscape. A model released by the National Cancer Institute (NCI) predicts that delays in care will cause 10,000 excess breast and colorectal cancer deaths over the next 10 years due to the pandemic. Vaccines will play an integral role in colorectal cancer patients and their support systems to return to care and resume ‘normal activities’; but based on anecdotal reports from the oncology and prevention community, there are questions about patients’ willingness to receive vaccines when available. The goal of this analysis was to better understand general uptake of vaccines at various time points, intention to vaccinate when available and what questions and concerns patients have about getting a vaccine.

Oncology patients’ communication experiences during COVID‑19: comparing telehealth consultations to in‑person visits


Purpose The COVID-19 pandemic created significant disruptions in cancer care, much of which was transitioned to telehealth. Because telehealth alters the way clinicians and patients interact with one another, this investigation examined patients’ perceptions of their communication with clinicians during the pandemic.

Method Patients were recruited from the Cancer Support Community, Fight Colorectal Cancer, and a market research firm to participate in an online survey. In addition to demographic and health-related information, respondents completed measures of patient-centered communication and evaluated how their communication in telehealth sessions compared with in-person visits.

Results From October to December 2020, 227 respondents (65.6% female, 64.6% Non-Hispanic White, 33.5% had 6 or more telehealth sessions, 55% were 50 or older) reported having some of their cancer care provided via telehealth. Respondents who were of racial/ethnic minorities, male, had more telehealth sessions, or had poorer mental health reported less patientcentered communication with clinicians. Most patients thought communication in telehealth sessions was “about the same” as in-person visits with respect to good communication (59%). However, patients thinking communication in telehealth sessions was “better” than in-person visits were more likely to be Hispanic (49%), Non-Hispanic Black (41%), under 50 years of age (32%), male (40%), and had more telehealth sessions (34%).

Conclusion Respondents reporting less patient-centered communication during the pandemic—e.g., persons of racial/ethnic minorities and males—were also more likely to evaluate communication in telehealth sessions as better than in-person visits. Further research is needed to understand reasons underlying this finding. Cancer care clinicians should take into account patient preferences regarding telehealth care, which may be particularly important for racial and ethnic minority patients.

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