Our Research

At Colorectal Cancer Canada, we believe in the importance of addressing the diverse and ever-changing gaps in cancer care research. To reflect that, many of our research initiatives are conducted through a pan-cancer lens.

CCC research initiatives are informed by the Colorectal Cancer Priority Setting Partnership and Early-Stage Colorectal Cancer Priority Setting Partnership, ensuring that our work is aligned with the research priorities of relevant stakeholders including patients and clinicians.

Detect Early

Screening Advocacy

Our research in screening advocacy aims to better understand patient and healthcare professional experiences & beliefs to make meaningful improvements to the early detection of the disease. Through our research efforts, we aim to improve CRC screening rates and lower the number of people who are diagnosed at advanced stages.

My Symptoms Matter

My_symptoms_matter-LOGO

Dismissal of symptoms and delayed diagnoses is witnessed across colorectal cancer patients of all ages with a slightly higher prevalence in early age onset adults. My Symptoms Matter aims to raise awareness and educate the public about self-identification of colorectal cancer symptoms and self-advocacy for care.

The aim of this study is to identify the experiences that Canadian patients have with their primary care providers with respect to their CRC diagnosis. While the benefits of provincial population-based CRC screening programs impact the targeted population between the ages of 50 – 74, early age onset (EAO) CRC cases in Canada are rising rapidly. Additionally, physical, psychological, and emotional side effects of the CRC diagnosis process predominantly affect younger patients. While significant resources have been dedicated to increasing CRC screening in Canada with some success, gaps in efficiency and optimization throughout the CRC care continuum remain. Particularly, the diagnosis process, a complex, patient-centred collaborative activity, can serve as a potential source for identifying disparities in care.

Both patient and family physician (FP) perspectives need to be considered to better detect deficiencies in the CRC diagnosis process. Although multiple studies exploring patient perspectives exist, few focus on the Canadian perspective and even less address the critical role primary care providers (PCPs) play in ensuring patients access to appropriate care. Factors such as CRC awareness, patient dismissal in primary care practices, and misdiagnoses are common challenges that impede the diagnostic process.

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  • Dr. Gerard Amanna, Family Physician
  • Dr. Karen Juce, Family Physician
  • Dr. Jazmin Marlinga, Family Physician
  • Dr. Petra Wildgoose, Family Physician
  • Dr. Noel Corser, Family Physician
  • Dr. Anthony Davies, Family Physician

Health Belief Model Study: Understanding the Health Beliefs Associated with Using a FIT for CRC Screening in Canada

This study aims to understand the current perceptions (e.g., health beliefs) among adults aged 50-74 towards using a Fecal Immunochemical Test (FIT) for colorectal cancer (CRC) screening in Canada. This survey will measure socio-behavioural factors (e.g., health beliefs, behaviours, and attitudes) related to using a FIT for CRC screening. This survey will utilize the health belief model (HBM) to understand the current perceptions towards using a FIT for CRC screening among the recommended screening population in Canada (adults aged 50 to 74).

Coming soon

Improve Patient Outcomes & Quality of Life

Precision Medicine

Get Personal

CCC conducts research initiatives that enable us to better advocate for personalized cancer care to address the unique needs of each person’s disease. By supporting timely access to biomarker testing, our ultimate goal is to improve patient outcomes and quality of life.

Cancer care in Canada is administered and delivered by the provinces and territories, a model which may impede harmonization of healthcare and equity of access across the country. Through the Get Personal Program, Colorectal Cancer Canada (CCC) developed a two-phase research project. The first phase included a pan-tumour, pan-Canadian survey that was sent to multi-disciplinary healthcare professionals aimed to conduct a high-level environmental scan of current biomarker testing (BT) practices at cancer care institutions across Canada. Results of this survey revealed that the lack of standardized guidelines and coordination between centres may inhibit the administration of precision oncology care in Canada. CCC developed a second-phase survey to assess needs and gaps in Canadian personalized medicine by gathering patients’ and caregivers’ experiences with BT in cancer treatment centres across Canada. This survey presents the first Canadian specific data.

In this study, a high-level environmental scan of current molecular profiling practices at cancer care institutions across Canada was conducted. Cancer care in Canada is administered and delivered by the provinces and territories, a model which may impede harmonization of healthcare and equity of access across the country. Personalized medicines depend on access to both the drug and molecular testing for the appropriate biomarker. The use of national guidelines for oncology clinical practice encourages standardization of biomarker testing in the US; in the absence of national guidelines in Canada, healthcare professionals rely on periodic publication of recommended testing standards by oncologists in their area of specialty. Furthermore, the process for reimbursement of molecular profiling is a patchwork in Canada, with limited data on current practices, rates of reimbursement, equity of access, and patient outcomes.

  • Dr. Alan Spatz
  • Dr. Andrea Vaags
  • Dr. Arun Seth
  • Dr. Brandon Sheffield
  • Dr. Brian Lo
  • Dr. Darren O’Reilly
  • Dr. David Hwang
  • Dr. David Schaeffer
  • Dr. Diana Ionescu
  • Dr. Fayez Quereshy
  • Dr. George Yousef
  • Dr. Gerald Batist
  • Dr. Irene Sadek
  • Dr. Jean-Claude Cutz
  • Dr. Jeanna McCuaig
  • Dr. José-Mario Capo-Chichi
  • Dr. Kara Semotiuk
  • Dr.Kristen Mead
  • Dr. Mahmoud Abdelsalam
  • Dr. Mary Kinloch
  • Dr. Mateya Trinkaus
  • Dr. Michael Carter
  • Dr. Patricia Tang
  • Dr.Paul Wheatley-Price
  • Dr. Philippe Joubert
  • Dr. Ralph Wong
  • Dr. Ron Burkes
  • Dr. Satereh Samimi
  • Dr. Scott Berry
  • Dr. Sender Liberman
  • Dr. Shahid Ahmed
  • Dr. Shantanu Banerji
  • Dr. Shaqil Kassam
  • Dr. Sharlene Gill
  • Dr. Simon Baxter
  • Dr. Stephen Yip
  • Dr. Suneil Khanna
  • Dr. Thierry Alcindor
  • Dr. Tracy Stockley
  • Dr. Weei-Yuarn Huang

Early Age-Onset Colorectal Cancer

n2y Never Too Young

Our research efforts in early age onset colorectal cancer enable us to better advocate for personalized supportive care that addresses the unique needs of young patients and their families with the ultimate goal of improving outcomes and quality of life.

Abstract: The incidence of early-age onset colorectal cancer (EO-CRC) in Canada has increased. To address the growing incidence of EO-CRC, Colorectal Cancer Canada (CCC) developed the Never too Young (N2Y) to identify gaps in care and evaluate patient and caregiver experiences with CRC. The survey was available online using SurveyMonkey across Canada between December 12th, 2022, and May 1, 2023. The patient and caregiver survey consisted of 113 and 94 questions, respectively. A total of 108 EO-CRC patients and 20 caregivers completed the survey. Many respondents were unaware of EO-CRC (41.6%) and the disease symptoms (45.2%) before diagnosis. Age at diagnosis was between 45 and 50 in 31.7%, and 72.8% of them were diagnosed at stages III or IV. A perception of an initial misdiagnosis was common (67.4%) for EOCRC patients, and 51.2% felt dismissed due to their age. Patients and caregivers reported impacts of EOCRC on their mental health, with 70.9% of patients expressing a need for support with depression and 93.3% of caregivers experiencing a constant fear of recurrence of their loved one’s cancer. Improving the Canadian population's awareness of EOCRC (e.g., CRC symptoms) is important for ensuring timely diagnoses. Similarly, it is critical to ensure healthcare providers are aware of the increase in EOCRC cases and the unique needs of these patients. Re-evaluation of the CRC screening age should be undertaken in Canada to determine whether lowering the start age to 45 years will improve outcomes in this demographic. 

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Abstract

The occurrence of early-onset colorectal cancer (EOCRC), affecting individuals under the age of 50, has risen significantly worldwide. Patients with EOCRC have different clinical presentation, pathologic features, treatment outcomes, and unmet needs compared to individuals with later-onset colorectal cancer. These differences underscore the need for specialized EOCRC programs. Yet, blueprints for their development are absent. This study by Colorectal Cancer Canada's Never Too Young program sought to fill this gap by interviewing founders of seven North American EOCRC centers, aiming to devise a stepwise blueprint for such initiatives. Interviews revealed significant medical and non-medical needs among EOCRC patients, an expanding patient population, and an extensive knowledge gap, driving the establishment of EOCRC centers. These centers, distinct in care delivery from other cancer clinics, require a dedicated navigator or coordinator to operate effectively. While funding is the leading challenge for establishing and maintaining an EOCRC center, there is a consensus on the critical need to launch and expand EOCRC centers. From these insights, the study proposes a 10-step actionable guide for developing EOCRC programs. This step-by-step approach can serve as a practical guide for organizations and health leaders dedicated to addressing the needs of this demographic.

Publication coming soon

  • Dr. Darren Brenner, Cancer Epidemiologist
  • Melyssa Aronson, Genetic Counsellor
  • Dr. Prithwish De, Epidemiologist
  • Aneta Fishman, Survivor & N2Y Ambassador
  • Dr. Sharlene Gill, Medical Oncologist
  • Dr. Cathy Eng, Medical Oncologist
  • Dr. Jonathan Loree, Medical Oncologist
  • Dr. Mary De Vera, Research Scientist
  • Dr. Mary Jane Esplen, Psychosocial Oncologist
  • Ellen Walker Matthews, Founder, Giant’s Head Grind

Improve Access to Care

Patient Values and Perspectives

The perspectives of patients are central to the definition of value of healthcare interventions such as cancer drugs, yet they remain the least understood and the most difficult to measure. The Patient Values and Perspectives Project aims to define, measure, and assign a weight to patient values in cancer drug treatment to ensure Canadian patients are heard in the evaluation of cancer care and the reimbursement of cancer drugs by public agencies. Through our research initiatives in patient values and perspectives, we aim to improve timely access to effective treatments for all patients.

Abstract: As we adopt value models to inform drug reimbursement, coverage, clinical trials, and treatment choices, aligning these models to reflect patient values and preferences becomes increasingly relevant. In this study, we focus on colorectal cancer (CRC), which is highly prevalent and a leading cause of death in Canada, and new drug treatment options are costly.

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  • Dr. Mary Jane Esplen, Psychosocial Oncologist
  • Dr. Deborah Marshall, HTA Expert
  • Dr. Judith Glennie, HTA Expert
  • Dr. Winson Cheung, Medical Oncologist
  • Dr. Feng Xie, Health Economics, Clinical Epidemiology and Biostatistics

Patient Engagement in Clinical Trials

PACT

Patient-centered cancer research is becoming standard around the globe. Cancer clinical trials are a key component of cancer research, and they are opening their doors to patients to involve them in all the phases of research in a transparent manner, from the formulation of the research question through to the utilization of the results. Colorectal Cancer Canada alongside a Steering Committee of senior clinical trials stakeholders and cancer patient groups is leading the Patient Engagement in Clinical Trials (PACT) initiative to facilitate patient group engagement in the clinical trial process.

  • Barry D. Stein, President & CEO, Colorectal Cancer Canada
  • Judy Needham, Chair of the Patient Representatives Committee, Canadian Cancer Trials Group (CCTG)
  • Martine Elias, Executive Director, Myeloma Cnaada
  • Richard Fajzel, Independent Senior Consultant, Former President & CEO of Exactis Innovation
  • Sabrina Hanna, Chief Innovation Officer, The Cancer Collaborative
  • Sarita Benchimol,
  • Stéphanie Michaud, President & CEO, BioCanRx
The US-based Clinical Trials Transformation Initiative (CTTI) demonstrated success in integrating patient and patient group voices into the cancer clinical trials continuum and served as the inspiration for a Canada-based version. In 2018, a Canadianized of the CTTI model was created (C-CTTI), serving as a framework for sponsor and patient group engagement at every step of the clinical trial process.

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The PACT Steering Committee created the Canadian Cancer Clinical Trials Stakeholder Charter to facilitate patient group engagement in the clinical trial process. The Charter outlines a shared vision, using common language, and provides a framework that Stakeholders can commit to and utilize as a guide to gauge their organizations’ patient centricity in Clinical Trials.

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Building Resilience in Cancer Care in Canada

ready for next round

To address the impact COVID-19 has had on cancer patients, Colorectal Cancer Canada (CCC) launched the ‘Ready For The
Next Round’ campaign that aimed to find innovative solutions to build a more resilient cancer care system that would minimize the impact
on cancer care delivery the next time a crisis hits.

Report from the Ready for the Next Round Thought-Leadership Roundtables on Building Resilience in Cancer Care and Control in Canada-Colorectal Cancer Canada
The COVID-19 pandemic illuminated vulnerabilities in the Canadian health care system and exposed gaps and challenges across the cancer care continuum. Canada is experiencing significant disruptions to cancer-related services, and the impact these disruptions (delays/deferrals/cancellations) have on the health care system and patients are yet to be determined. Given the potential adverse ramifications, how can Canada's health care systems build resilience for future threats?

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External Research Initiatives

Colorectal Cancer Activity Dashboard

Colorectal Cancer Canada partnered with Dr. Darren Brenner, molecular cancer epidemiologist from the University of Calgary, to create a near real-time Colorectal Cancer Activity Dashboard (CRCAD) that will enable stakeholders to develop, plan, and design evidence-driven mitigation strategies to improve participation of both screened and under-screened eligible populations and redirect efforts to areas impacted most by the pandemic. The province of Alberta was selected as the pilot site for this project.

Preliminary Results

We have a functional dashboard, which has the base functionality needed for deployment. The dashboard is highly customizable without writing new code, and can easily be populated with new datasets. Data processing pipelines to clean, aggregate and estimate temporal statistics for incidence, colonoscopies and surgeries have been constructed.

Next Steps

Further data collection and processing is planned for full operation of the dashboard. The function, appearance and datasets within the dashboard will be reviewed and validated by user testing and input from stakeholders.

OPTIMISTICC (Opportunity to Investigate the Microbiome’s Impact on Science and Treatment in Colorectal Cancer)

OPTIMISTICC is an international team working together to understand the colorectal cancer microbiome: what it is, how it is associated with cancer, and what treatments will affect the microbiome to promote health.

Our objectives are to:

  1. Map the colorectal cancer microbiome
  2. Develop microbiome-targeted therapies for colorectal cancer
  3. Share and disseminate our findings

Colorectal Cancer Canada serves on the OPTIMISTICC Patient Advocate Team, which aims to ensure that research being undertaken focuses on the benefit it may bring to those who may be diagnosed with bowel cancer in the future.

Colorectal Cancer Canada - Pfizer - Thermofisher Quality Improvement Grant

In 2023, Colorectal Cancer Canada partnered with Pfizer and Thermofisher to provide a quality improvement grant dedicated to implementing broader access to next generation sequencing (NGS) for Canadians with advanced cancer. The program will help support the integration of precision medicine into the treatment of patients with metastatic colorectal cancer and the collective effort to improve outcomes for advanced cancer patients. Two recipients were selected, and will collectively receive over $300,000 in grants for quality improvement initiatives to empower Canadian healthcare centres without in-house molecular testing capacity, and to improve molecular testing turnaround times for individuals with metastatic colorectal cancer and other advanced cancers.