Connor’s Playbook
Welcome to the Connor Page Playbook for Navigating Clinical Trials
What began as one family’s journey has grown into a resource with the power to profoundly support and benefit the wider pancreatic cancer community.
Scroll to discover
Meet Connor
01
Basics
Build a strong foundation.
02
Considerations
Explore important early topics.
03
Your Priorities
Consider goals for exploring trials.
04
Exploring Options
Track and organize potential trials.
05
Finding Trials
Compare trials and understand eligibility.
06
What to Expect
Understand all the steps for joining a trial.
A fund has been established in Connor’s memory with the goal of continuing to support others with pancreatic cancer get access to novel treatments.
In December 2021, after ongoing abdominal pain, Connor’s scans suggested pancreatitis, but repeated biopsies did not give clear answers.
At just 38, pancreatic cancer seemed unlikely, but in April 2022 a biopsy confirmed stage IV pancreatic cancer. From day one, Connor’s focus was simple: be there for his boys. Throughout treatment, he and his family lived by a “no stone unturned” approach, pursuing every possible treatment, clinical trial, and supportive care option.
Testing for inherited and tumour genetic changes became a priority. Getting enough usable tumour tissue was difficult, but persistence paid off.
Results showed an inherited change in a gene called ATM, plus cancer-specific changes in KRAS and FGFR1. This information shaped Connor’s treatment and opened doors to trials. The ATM change helped explain his strong response to a certain chemotherapy (Folfirinox) and suggested he might benefit from a targeted drug called Olaparib and from radiation. Testing also brought peace of mind for him and his wife, Jen, as they learned their children were not at risk for a rare childhood condition linked to ATM.
He and his family began researching clinical trials early, and in September 2023, Connor joined a promising early-phase trial in Cincinnati studying the KRAS-targeting drug RMC-6236 (daraxonrasib)
Within five weeks, his main tumour had shrunk by more than 50 percent, giving him months of feeling stronger and more like himself. (As of 2026, daraxonrasib has continued to show promising results in clinical trials for KRAS-mutated cancers and has received expedited regulatory attention in the United States.)
By March 2024, signs of the cancer growing again meant it was time to switch treatments. The trial had given precious time, hope, and memories. Connor faced his illness with strength and hope, supported by exceptional care, family, friends, and a deep belief that he could overcome the challenges before him.
Connor Page passed away at home on October 10, 2024, at the age of 41, surrounded by his wife, two young sons, his mother, and sister. Known for his humour, kindness, and authenticity, Connor was deeply loved by family and friends.
In December 2021, after ongoing abdominal pain, Connor’s scans suggested pancreatitis, but repeated biopsies did not give clear answers.
At just 38, pancreatic cancer seemed unlikely, but in April 2022 a biopsy confirmed stage IV pancreatic cancer. From day one, Connor’s focus was simple: be there for his boys. Throughout treatment, he and his family lived by a “no stone unturned” approach, pursuing every possible treatment, clinical trial, and supportive care option.
Testing for inherited and tumour genetic changes became a priority. Getting enough usable tumour tissue was difficult, but persistence paid off.
Results showed an inherited change in a gene called ATM, plus cancer-specific changes in KRAS and FGFR1. This information shaped Connor’s treatment and opened doors to trials. The ATM change helped explain his strong response to a certain chemotherapy (Folfirinox) and suggested he might benefit from a targeted drug called Olaparib and from radiation. Testing also brought peace of mind for him and his wife, Jen, as they learned their children were not at risk for a rare childhood condition linked to ATM.
He and his family began researching clinical trials early, and in September 2023, Connor joined a promising early-phase trial for a KRAS-targeting drug in Cincinnati.
Within five weeks, his main tumour had shrunk by more than 50 percent, giving him months of feeling stronger and more like himself.
By March 2024, signs of the cancer growing again meant it was time to switch treatments. The trial had given precious time, hope, and memories. Connor faced his illness with strength and hope, supported by exceptional care, family, friends, and a deep belief that he could overcome the challenges before him.
Connor Page passed away at home on October 10, 2024, at the age of 41, surrounded by his wife, two young sons, his mother, and sister. Known for his humour, kindness, and authenticity, Connor was deeply loved by family and friends.
“The pathway to returning to full health is different for everyone. Your path may include standard therapies, clinical trials, alternative therapies and other modalities. I’ve learned from other survivors that it takes a combination of approaches to return to full health. I encourage you to explore all possible treatment options.”
Connor Page, during Pancreatic Cancer Awareness Month, 2023
Determined to help others, Connor was driven to improve access to clinical trials, inspiring the creation of the Connor Page Fund for Improved Access to Clinical Trials with Pancreatic Cancer North America.
A key part of this legacy is “The Connor Page Playbook for Navigating Clinical Trials,” born from his and his family’s life-altering experience. What began as one family’s journey has grown into a resource with the power to profoundly support and benefit the wider pancreatic cancer community. The knowledge and insight they gained are an invaluable gift, offering guidance, hope, and practical help to others. Connor’s courage and generosity will continue to create ripples for years to come.
The memories Connor and his family made throughout Connor’s journey with pancreatic cancer, including his opportunity to participate in a clinical trial:
- 6+ trips to the cottage
- 6 Jays games attended
- 5 birthdays with our kids (one turning 2, 3, 4 and the other turning 5 and 6)
- 2 milestone birthdays for both of us – turning 40!
- 10 T-ball games coached, many more attended
- 4 Taekwondo belt promotion ceremonies attended for the kids
- Countless kids’ activities attended
- Countless nightly wrestling matches with the boys and weekly movie nights
- 3 concerts attended
- 3 weekends away as a couple
- 1 son’s graduation
- Many trips to the movies
- 10+ days on the slopes
- 3 trips to Bondi
- 3 Christmas and New Year’s and many holiday celebrations
- Seeing so many firsts for our kids
- Countless board games played
- Countless dinners with friends and family
- Countless memories made
This is for Connor, and for you.
Understanding the Basics of
Clinical Trials
Before beginning your search for a clinical trial, it can be helpful to understand some of the basic concepts behind how trials work. This section introduces key definitions, explains why clinical trials matter, outlines who is involved, and describes the safeguards in place to protect participants.
What is a clinical trial
Clinical trials are research studies designed to help us better understand cancer and find more effective treatments.
These studies evaluate new or different ways to prevent, detect, diagnose, treat, or manage cancer and its symptoms. Clinical trials may be an option at different stages of cancer care, but they are separate from the standard of care. You can receive excellent care and have good outcomes without participating in a clinical trial. Taking part is your choice, not something you have to do.
The building blocks of a clinical trial
Clinical trials follow a series of carefully controlled steps called phases.
Each phase answers specific research questions. Early phases focus on safety, side effects and finding the right medication dose or treatment approach, while later phases look at how well a treatment works, sometimes compared with existing options. Participants generally take part in one phase of a clinical trial, not all of them.
Phase 1
Phase 1 trials are the first stage of testing a new treatment in people. They usually involve a small group of participants. These trials focus on safety, side effects, and finding an appropriate treatment dose.
Phase 2
Phase 2 trials generally involve more participants than Phase 1 trials. Researchers continue to monitor safety and side effects while gathering more information about how well the treatment works.
Phase 3
Phase 3 trials usually involve larger groups of participants and often compare a new treatment with the current standard treatment. Researchers gather more information about the treatment’s benefits, side effects, and risks. Results from Phase 3 trials help inform decisions about whether a treatment should be approved for use in patients.
Phase 4
Phase 4 studies take place after a treatment has been approved and is available for use. They provide additional information about its long-term safety, effectiveness and use in a broader population, including side effects that may not have been identified in earlier studies.
Each phase builds on the one before it, helping researchers determine whether a treatment is safe and promising enough to continue being tested.
Why clinical trials matter
Clinical trials play a key role in advancing cancer care. They help researchers learn more about new and existing treatments, while giving some patients access to care options that may not yet be widely available. They also give patients an opportunity to contribute to research that may help improve cancer care in the future.
Clinical trials may include:
- New chemotherapy options
- Personalized medicine, including targeted therapies[i] tailored to the specific features of a person’s cancer
- New or improved surgical and radiation[i] techniques
- New imaging tools or blood tests to help detect cancer earlier
- Improved ways to manage symptoms and treatment side effects
- Research into how cancer develops and progresses
- Supportive care approaches designed to improve quality of life
- Palliative and supportive care
Why participate in a clinical trial
There are many benefits to joining a clinical trial:
Opportunity to Try New Treatments
Clinical trials can provide access to new treatments that are not yet widely available. Some may offer potential benefits compared with current options, but this does not mean they are better for everyone. A clinical trial may not be the right option for you.
Access to Expert Medical Care
Clinical trial participants often receive care from healthcare professionals with specialized expertise in cancer and the treatment being studied.
Enhanced Monitoring and Care
Clinical trials often involve regular monitoring throughout the study. This may include more frequent tests and follow-up visits with healthcare professionals and the study team.
Contributing to Medical Research and Helping Others
Your participation helps researchers advance scientific knowledge, which can lead to new and improved therapies for future patients.
Timing is everything
If you're interested in clinical trials, don't wait to start doing your research. Clinical trials can sometimes be the first line of treatment - meaning they happen before chemotherapy. Other times, a clinical trial may be for patients who have already received a standard of care treatment that has stopped working. You will want to know which types of trial drugs show the most promise so you can focus on those options if and when the time is right for you.
The team behind a clinical trial
A clinical trial involves a team of healthcare professionals and study team members, each with specific roles and responsibilities. The Principal Investigator (PI) leads the trial at the study site and is responsible for overseeing the study and the care of participants.
Co-Investigators
Co-investigators work with the Principal Investigator to conduct the trial. They contribute their expertise and may be involved in study activities and participant care.
Study Coordinators
Study coordinators help manage the day-to-day activities of a clinical trial. Their responsibilities can include recruiting participants, explaining study procedures, coordinating visits and serving as a point of contact for participants throughout the trial.
Laboratory Professionals
Laboratory technicians and technologists support clinical trials by processing and analyzing samples, such as blood and tissue[i], and performing laboratory tests. The results can help researchers evaluate treatments and study biological or genetic changes.
Participants
Participants are the foundation of every clinical trial. Clinical research would not be possible without their help.
Staying Organized During Cancer Care
There are many people involved in your entire care team. This can become especially true during a clinical trial. From your primary oncologist and nurse to the study coordinator, social worker, and palliative and supportive care team, each person has a specific role. They are not always linked directly to the clinical trial team but can still play an important part in supporting your health and well-being throughout the process. This also means they could be located across different hospital systems. You may also have access to resources like a 24-hour oncology line for urgent concerns or symptom management.
It can be helpful to keep all this information in one place including names, roles, contact details, and when to reach out to each person. Having a clear record makes it easier to know who to contact and helps ensure that nothing falls through the cracks when questions or issues come up.
Early Considerations
A diagnosis of pancreatic cancer can be overwhelming. If you are interested in pursuing treatments beyond the standard of care, the section below can help with some of the early considerations after a diagnosis.
Informing your treatment plan: Genetic and genomic testing
Genetic and genomic testing can provide information that may help inform your treatment and care. Genetic testing looks for inherited genetic changes passed down from parents, while genomic testing looks for genetic changes in the cancer.
Speak with your oncology team early after diagnosis to ask whether this testing is right for you.
Depending on your situation, these tests can:
- Help guide treatment decisions
- Identify treatment options that target specific features of the cancer
- Help determine eligibility for clinical trials
- Provide information about cancer risk that may be relevant to you and your family
Because genomic testing can play an important role in informing treatment decisions, access to timely and comprehensive testing matters. My CANcer Code, an initiative from Pancreatic Cancer North America, helps eligible pancreatic cancer patients in Canada access advanced genomic and biomarker testing, along with personalized support to help navigate results and next steps.
Learn more about My CANcer Code here.
You can learn more in the Genetic Testing section of the PCNA website.
Obtaining tumour tissue for genomic testing
If genomic testing is recommended, tissue collected during a procedure that is already part of your cancer care, such as a biopsy or surgery, can often be used for testing. It’s helpful to talk with your oncologist before a procedure about whether tissue can be collected and saved for potential genomic testing. Planning ahead can help avoid repeat procedures and make the testing process more efficient. If the initial sample does not contain enough usable tumour tissue, your care team can discuss whether another sample may be possible or appropriate.
In some cases, a blood test called a liquid biopsy may be an option. It looks for small pieces of genetic material released by cancer cells into the blood. A liquid biopsy may be useful when it is difficult to obtain enough tumour tissue.
The Testing Process: What to expect
The testing process can vary depending on where you receive care and the type of testing being ordered. Testing arranged through your healthcare team is generally coordinated as part of your cancer care.
In some situations, particularly when testing is arranged privately or through an external laboratory, additional steps may be needed. These may include completing consent forms, confirming testing requirements, or coordinating with the testing laboratory.
If the process feels overwhelming, consider asking a caregiver or loved one to help with paperwork or communication. You don't have to manage this on your own.
Making sense of the test report
Genetic and genomic test reports provide information about genetic changes identified through testing, including whether any changes may be relevant to your cancer or treatment. Your healthcare team can help explain what your results mean for you and which findings are most relevant to your care. You don’t need to interpret the report on your own.
Some genetic findings may be linked to treatment options or clinical trials, while others may not have an established treatment option. Your results can help inform discussions about your treatment and next steps.
Genetic and genomic testing: Cost and access
Access to genetic and genomic testing varies across Canada. The type of test, cost and eligibility can depend on where you live.
Coverage differs by province, cancer centre, and individual eligibility. Some tests are covered by provincial cancer programs, clinical trials, or provincial health insurance for patients who meet specific criteria. Other tests are only available privately, usually requiring out-of-pocket payment, with costs varying by lab or provider.
Some testing may be available through public programs, private coverage, clinical trials or research studies for people who meet certain criteria. Other testing may require out-of-pocket payment, with costs varying by test and laboratory.
Your healthcare team can explain what testing is available to you, whether you are eligible and any costs. Ask how long results may take, as timing can be important when testing is being considered to help guide treatment decisions.
Programs such as PCNA’s My CANcer Code are helping expand access to genomic testing for eligible people with pancreatic cancer in Canada. The program also provides support to help patients navigate the testing process and next steps.
If you would like additional guidance as you explore your options,
our Pancreatic Support Hub team is here to help you think through next steps and prepare for informed conversations with your care team.
For more detailed information about finding clinical trials and what to expect during the process:
Keep an open mind about treatment options
Don't be discouraged if your genomic testing report does not list any mutations for which approved treatments have been identified. A report that shows no approved targeted treatments means that there are currently no therapies specifically approved for the genetic mutations identified within your tumour.
There may be therapies that are investigational, meaning they are being studied in clinical trials and may still represent an important potential option. There are also clinical trials that are not specific to a genetic mutation. Beginning your search early, staying organized, and remaining open to different possibilities can help you and your care team explore the full range of potential treatment opportunities.
Palliative and supportive care during active treatment
Palliative and supportive care is an important part of care from the time of diagnosis and can be provided alongside treatment or clinical trials. It focuses on improving quality of life by helping manage symptoms such as pain, fatigue, nausea, appetite changes, constipation, sleep concerns, and emotional distress. A palliative and supportive care team can help patients feel better while receiving chemotherapy and during clinical trials by helping to manage and reduce symptoms of the disease and side effects of treatments.
Palliative and supportive care is often misunderstood as being the same as end-of-life or hospice care, but it is not limited to end-of-life situations. It can be introduced at any stage of illness and is intended to help people feel as well as possible throughout treatment.
Additional supportive resources, including nutrition guidance, exercise during treatment, and emotional or spiritual support, can further enhance well-being. Please consult your care team regarding palliative and supportive care options.
Tracking symptoms, medications, meals, and side effects can help your care team identify what is working and where adjustments may be needed. It can also help you prepare for appointments, especially when seeing multiple providers or considering a clinical trial.
The medication and symptom trackers below can help organize this information and reduce administrative time during appointments, including emergency department visits or when seeing new providers.
Questions to ask about palliative and supportive care
These questions can help you start a conversation with your care team about palliative and supportive care:
- Can I be referred to palliative and supportive care now, even while receiving treatment?
- What symptoms can palliative and supportive care help manage?
- How can I better manage fatigue, appetite changes, or digestive symptoms?
- Are there nutrition or exercise specialists available through my cancer centre?
- What emotional or psychosocial supports are available to me and my family?
- Should I be tracking symptoms or side effects between appointments?
- Are there tools or templates available to help me prepare for visits?
For more support, please reach out:
Don’t wait to ask for palliative and supportive care
“One of the most important lessons we learned was that palliative care is not just for the end of life. At diagnosis, doctors said Connor needed to stay in hospital until he could tolerate oral pills to manage pain. He worked with a forward-thinking palliative care practitioner and family member to go home on an IV “pain pump”. We learned not to worry about “bothering” his doctors and nurses. They wanted to help and could do so better when they understood our goals – to get as much time at home with family as possible.”
– Jen Lovrics, Connor’s wife
Consider your “Why”:
Is a Clinical Trial Right For You?
A clinical trial may involve standard care as well as the treatment or approach being studied. It is important to weigh the potential benefits and risks of participating. Choosing to participate is a personal decision that may depend on many factors.
Before enrolling, learn what the trial is testing and how it may affect your care, daily life, and future treatment options. Asking questions early can help you understand what to expect and work with your care team to determine whether a trial is right for you.
Start a conversation: Speaking with care team
Clinical trials may offer access to new and emerging treatment options. However, many people are unsure how, or when, to bring up clinical trials with their oncologist or care team.
Starting the conversation early in your treatment journey can help ensure that you are aware of all available options. Asking about clinical trials does not mean you are committing to participate. It is simply a way to gather information and understand whether a trial might be appropriate for you now or in the future.
Your oncology team should expect questions about treatment options, including clinical trials. Open discussions allow you and your care team to make informed decisions together.
You may also wish to speak with other trusted members of your healthcare team or seek a second opinion as part of your decision-making process. Exploring different perspectives is a normal and appropriate part of advocating for your care.
To help guide these conversations, we have created a companion handout with suggested questions and tips for starting the discussion. It is designed to help you feel prepared, confident, and informed when speaking with your doctor about clinical trial options.
Consider your goals and your “why”
It’s important to consider your goals when deciding whether to participate in a clinical trial. Some trials require travel or frequent visits to the clinic. Have conversations with your loved ones about balancing time away from them and whether a trial would be aligned with your goals for treatment. Once you have these goals in mind, it will help to inform what trials you would consider and where.
Connor’s “Why”:
For Connor and his wife, the journey through standard of care treatment and the desire to participate in a clinical trial was driven by his “why” - to have as much time as possible being a dad. This journey is different for everyone.
200+
Clinical trials tracked and reviewed
150+
Disgusting vegetable juices made with love
5
Books read on healing your cancer
15
Trips to Cincinnati for the KRAS trial
Countless
Memories made as a family
Doing the Research:
How to Find Clinical Trials
As you begin thinking about clinical trials, you can start exploring studies that could be relevant to your situation and eligibility. Balancing the symptoms of pancreatic cancer, treatment side effects, and everyday life can be overwhelming. You do not need to manage this alone. Consider asking a loved one, friend, or caregiver to help with research, gather information about trials, and prepare questions for oncology appointments. You may also find it helpful to bring a support person to your appointments to help take notes and ask questions.
Everyone’s search looks a little different.
The tools listed here are just a few that Jen and Connor found especially helpful. If one doesn’t feel like the right fit, keep exploring. Connecting with others affected by pancreatic cancer can offer valuable opportunities to learn from shared experiences, including how others navigated clinical trials, and build meaningful relationships. There are many resources available to help you find the support and connections that feel right for you.
Finding trials and doing the research
Several resources can help you start your research to identify clinical trials. Final eligibility is determined by the clinical trial team based on the study criteria.
Ask your healthcare team
You may hear about clinical trials from your healthcare team, or you can ask them about trials that may be available to you.
Your oncologist, family doctor, or other members of your care team can help you understand which trials may be available at their institution or others. They may also help explain whether a trial could be appropriate for your situation, review information you find through your own research, and help guide next steps, such as referrals or discussions with clinical trial teams or coordinators.
This handout can help to facilitate the conversation: Talking with your Doctor About Clinical Trials
Clinical trial or patient navigators
Some hospitals and organizations offer clinical trial or patient navigation services to help you explore trial options, understand how to access them, and connect with the right resources.
Connect with a clinical trial coordinator
Clinical trial coordinators at hospitals or research centres can answer questions about eligibility, trial requirements, and what taking part involves. Ask your healthcare team how to connect with the trial coordinator, or look for the study contact information in the trial listing.
Do your own search
You can also search clinical trial databases and websites directly to learn more about available studies. Some allow you to upload genetic or genomic testing reports and receive a personalized list or summary of potential trials. Before uploading personal health information or test results, review how your information will be used and protected.
- BiomarkerHelp (International)
- Cancer Trials Canada (Canada only)
- ClinicalTrials.gov (International)
- Pancreatic Cancer Action Network Clinical Trials (US only)
- MyTomorrows (International)
The sites and resources listed have not been independently validated or endorsed by PCNA. Patients and caregivers should use their discretion when accessing or using these resources and should discuss them with their healthcare team to determine whether they are appropriate for their individual needs.
Personalized trial matching services can save time
“We were amazed with the services available to find clinical trials personalized to your genetics. You can upload your genetic reports and receive a list of trials that are specific to your situation, with summaries written in plain English. Although none of the searches are perfect, this handout is much easier to bring to your oncologist to discuss options.”
- Jen Lovrics, Connor’s Wife
Understanding eligibility criteria
Every clinical trial has specific eligibility criteria that determine who can participate. These are often divided into:
Inclusion Criteria
Requirements that must be met to be eligible to participate in a clinical trial.
Exclusion Criteria
Rules used to identify people who should not participate in a clinical trial, often because participation may not be safe or beneficial for them.
When reviewing trials, some of the most common eligibility factors include:
Disease type
Some trials include a broad category, such as “all solid tumours,” while others are specific to a type of pancreatic cancer, such as adenocarcinoma or neuroendocrine.
Biomarkers
A biomarker can be a gene, protein, or other substance in the blood or tumour tissue that may help guide treatment decisions.
Disease stage
Whether the cancer is Stage 1, 2, 3, or metastatic (Stage 4).
Treatment history
Some trials are designed for people starting treatment for the first time, while others are for those who have already received treatment.
Performance or functional status
How well you are able to carry out everyday activities and how much help you need with daily tasks. Some trials require participants to have a certain level of daily function.
Clinical trial databases can contain a large amount of information. As an example, we have created a guide to help you interpret the search results for clinicaltrials.gov more confidently.
You don’t need to review all of the eligibility details yourself. Your care team can help, and the trial team can answer questions if you’re considering a specific trial.
When looking at potential trials, details such as your disease stage, previous treatments, and genetic or genomic test results may help narrow down trials that could be relevant to you. Some eligibility requirements, such as blood test results, may only be determined after additional testing.
Organizing the results
Once you’ve gathered information about potential trials, it can be helpful to summarize the options in a list or table. This may make it easier to review with your oncologist, compare eligibility criteria, and identify which trials are most relevant to your situation.
If you would like a simple way to organize potential trials, our Trial Tracker template can help you capture key details and compare options as you review them with your care team.
Stay up to date on new trials and treatments
Subscribe to newsletters or updates from pharmaceutical companies developing therapies for your specific cancer type or genetic changes. These updates can alert you to new clinical trials, emerging treatments, and drug approvals, helping you stay informed and giving you more information to discuss with your care team.
Organized & Informed: Exploring Clinical Trial Options
If a clinical trial is something you are considering, preparing in advance can be helpful, even while you are on a treatment that is working. Being organized ahead of time can make it easier to explore other options if your treatment plan changes.
Narrow down your options
Clinical trial databases can help you identify potential trials. Some allow you to set alerts or subscribe to updates when new trials matching your search criteria become available.
Bringing a short list of potential trials or treatment options to discuss with your oncologist can help you feel prepared and make it easier to discuss your options.
New trials open regularly, and eligibility criteria can change. Staying organized can make it easier to revisit your options as your treatment plan evolves.
Ask your oncologist about emerging treatment options
Ask your oncologist: “Are there any clinical trials or new treatments I should know about?”
Your oncologist may share information about promising emerging treatments that could be relevant to you. Use what you learn to focus your search on options worth exploring.
Understanding medical records and referrals
Keeping your medical information organized can help make exploring clinical trials easier.
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Clinical trial teams may require certain medical documents to assess preliminary eligibility.
These commonly include:
- Oncologist notes from recent appointments
- Recent lab results
- Radiology reports (CT, MRI, PET scans)
- Pathology reports
- Germline genetic testing reports
- Genomic testing reports
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If you're asked to share medical information, keeping everything organized in one place can reduce delays and stress.
As treatment continues, updated information may need to be shared, depending on how referrals are managed. Keeping important documents together in a secure location can make it easier to provide information to the clinical trial team when needed and keep track of your treatment history. Ask your care team how information should be shared securely.
Often, your doctor or care team will coordinate directly with the clinical trial team and provide the necessary information.
In some cases, you may need to provide or request some of your medical information. Many healthcare systems allow patients to request their own medical records, and some hospitals and clinics provide online portals where you can view or download your information. Asking your care team how records and referrals are handled can help you understand what to expect.
Starting the conversation
If you are interested in specific trials but are currently stable on treatment, you may still be able to take preparatory steps.
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Connecting with trial sites.
Reaching out to trial sites on your short list can help you understand timelines, eligibility requirements, and what may be needed if a spot becomes available.
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Joining a clinical trial is a significant decision.
Before enrolling, it’s important to understand what the study is evaluating and how participation could affect your care, schedule, and quality of life. Asking questions early can help you feel more informed and confident in your choices.
The study team can answer your questions throughout the process.
The study team will provide information about the trial, but it’s important to ask about anything that is unclear or relevant to your situation so you can feel confident in your decision.
Remember, taking these steps does not obligate you to enroll in a trial. They can help you be prepared if a trial becomes an option for you. Even if you decide not to participate, gathering information can help guide thoughtful discussions with your oncologist and care team as you consider future options.
The same clinical trial may be offered at multiple sites
Some clinical trials are offered at multiple hospitals or research centres, so a trial that is not available at your treatment centre may be available at another participating site.
What to Expect:
Your Journey Through a Clinical Trial
If you are eligible for a trial, the next step is typically a screening process to confirm eligibility. This may include reviewing your medical history, completing blood tests, imaging or other assessments, and meeting with the study team. Before completing screening assessments, you will review and sign the informed consent form if you decide to participate.
Understanding informed consent
Participating in a clinical trial begins with a process called informed consent.
The study team will review the trial with you and provide a document called an informed consent form. It explains important information about the study, including:
- Why the clinical trial is being done
- Other available treatment options
- What tests, procedures, and medications may be part of the trial
- Extra visits and time commitments
- Potential side effects, risks and benefits of participating
- How your privacy will be protected and who will have access to your information
- Who to contact if you have questions or concerns during the trial
You will have time to review the information, ask questions, and discuss anything you are unsure about before deciding to participate. If you decide to join the trial, you will sign the consent form and receive a copy for your records. You can take as much time as you need to make your decision.
Signing the consent form does not mean you must stay in the study. You can withdraw[i] at any time, for any reason. If you decide not to participate or later decide to leave the trial, your regular medical care will not be affected.
You are not a statistic
Jen and Connor chose not to look at statistics. “No one person is a stat,” Jen said. “Everyone’s journey is unique. For us, that shift helped us focus on hope.”
Why it matters: Clinical data can be helpful, but it doesn't define you. Focusing too much on numbers may be overwhelming and impersonal. For many families, stepping away from the stats and focusing on individual strength, support, and possibilities can make space for optimism and clear decision-making.
Screening
After you provide informed consent, the study team may complete screening procedures to confirm that you meet the trial’s eligibility criteria. The screening process may include:
- A review of your medical history
- A physical examination
- Lab work, such as blood tests, and other procedures needed for the study
If the screening process confirms that you meet the trial’s eligibility criteria[i], you will then be enrolled in the study.
Ineligibility and next steps
Not everyone who is assessed for a clinical trial will meet the eligibility criteria, and finding this out can feel discouraging. However, there may be other options to consider. Your healthcare team can help you explore:
- Other clinical trials that may be a better fit
- Compassionate access programs for new treatments that are not yet approved or available in Canada
- Palliative and supportive care options to help manage symptoms and support well-being
Always advocate for yourself
Don’t be afraid to advocate for yourself or your loved one. No question or symptom should be ignored, and you should not be afraid to ask questions of your care team.
Trial Participation
Enrolling in a clinical trial marks the start of a new phase in your care, often involving closer monitoring, following specific protocols, and increased communication with your healthcare and study teams. It is important to stay organized by keeping a record of appointments, test results, medications, and any symptoms or side effects. Clinical trials may include procedures and assessments that differ from standard care, so understanding what to expect can help reduce stress and ensure you're prepared for the process.
Starting a Trial
Once enrolled, you will follow a schedule of study visits, tests, and treatments outlined by the study team.
They will monitor your health closely and share information related to the study, such as updates on treatment, side effects, safety concerns, new findings, or changes to the study protocol.
Some clinical trials require a washout period between treatments. This means there may be a period when you stop your current treatment before starting the study treatment. Ask the study team how this may affect the timing of your treatment.
Study visits and travel coordination
The frequency of study visits will vary by trial and how the study treatment is given and monitored. Some visits may require lab work, scans, or other study-related tests at the trial site, while others may be completed closer to home.
You can request a schedule of study visits, which may also be available through your hospital’s patient portal. This can help you plan ahead for appointments, travel, and other costs. If you have scheduling conflicts, discuss them as early as possible to see what options may be available.
Monitoring your response
Monitoring schedules are determined by the study protocol and may differ from your usual care. Assessments may be more frequent early in the trial and can include imaging, bloodwork, and evaluation of symptoms and side effects. Depending on the results, the study team may delay treatment, adjust the dose, or stop the treatment. Any changes will be discussed with you, and your healthcare team can help you understand what they mean for your care.
Managing your care during a clinical trial
Side effects may be different from what you expect. Tell the study team about any new or changing symptoms, even if they seem minor. Many side effects can be prevented, reduced, or managed, but your team needs to know what you are experiencing to help. Raising concerns early can make a meaningful difference.
The study team will usually review any new medications, over-the-counter products, or supplements before you start them. This helps avoid potential interactions and ensures the team can accurately assess your response to treatment.
Participating in a clinical trial does not mean giving up control of your care. You still have the right to ask questions, raise concerns, and make decisions throughout the process. Supportive care and quality of life remain important, and your current care team, including your family doctor, oncologist, palliative and supportive care team, and other providers, can continue to support you alongside the study team.
Stay Ahead - Track Symptoms as They Happen
Keeping a simple record of symptoms and side effects can make it easier to share accurate information with your study team and identify patterns over time.
What the trial and the treatment meant to Connor
For Connor, the trial was a chance to feel “normal”. He was fortunate to have limited side effects from the trial drug. Unlike with chemo, he felt like himself again for six glorious months.
Prepare for your oncology appointments
Preparing for your oncology appointments in advance can help make the experience feel less overwhelming and more productive. Taking a few moments beforehand to write down your questions, concerns, or symptoms can help you feel more focused and confident during the visit.
Having your thoughts organized makes it easier to guide the conversation, ensure your priorities are addressed, and leave the appointment feeling clearer about next steps.
Whenever possible, bring a support person to appointments, either in person or virtually. They can help to take notes, ask follow-up questions, and help ensure that nothing important is missed. This allows the patient to stay present and fully engaged.
Beyond the Treatment: Costs, Travel, and Reimbursements for Clinical Trials
The costs of participating in a clinical trial can vary depending on the trial, study site, and your personal circumstances.
For Canadians considering an international clinical trial, costs may differ from those associated with trials in Canada. In addition to travel and accommodation, you may have other expenses, such as consultation fees, testing costs, or other out-of-pocket costs.
The following outlines key considerations for clinical trials in Canada and abroad, as well as potential sources of financial support that may help offset some expenses.
For Canadians considering participation in a U.S.-based clinical trial, the cost structure can be significantly different. In addition to travel and accommodation expenses, there may be consultation fees, diagnostic testing costs, or other charges depending on the institution and study design. Insurance coverage and provincial health reimbursement policies may also vary.
The overall cost of participation can differ widely depending on the trial site, the type of study, and your personal circumstances. The following outlines key considerations for clinical trials in Canada and abroad, along with potential sources of financial support that may help offset expenses.
Cost considerations to join a clinical trial in Canada
Costs can vary depending on the trial, study site, and your circumstances.
Some costs may be covered by the trial, while others may not. Routine medical care is typically covered through provincial or territorial health coverage or private insurance, but you may have other expenses such as travel, accommodation, medications not provided by the trial, and other out-of-pocket costs.
Before joining a clinical trial, ask the study team which costs are covered and which you may need to pay. If some costs are not covered, financial support may be available through a variety of programs and resources.
Tips for managing clinical trial costs in Canada
Research options early
If you are considering a clinical trial, ask about potential costs as early as possible. Understanding the frequency of study visits and whether you may need to travel or stay overnight can help you anticipate expenses and explore available support.
Explore multiple sources of support
Financial assistance may be available from a range of sources, including:
- Provincial or territorial travel assistance programs
- Pharmaceutical company patient support programs
- Hospital-based assistance programs
- Charitable, patient advocacy, community, and not-for-profit organizations
Program requirements and availability vary, so speaking with your care team, social worker, or financial counsellor early can help you identify programs that may apply to your situation.
Keep detailed records
Keep organized records of receipts and other documentation for travel, accommodation, meals, parking, medications, and other trial-related expenses. These records may be helpful for reimbursement applications, insurance claims, or tax purposes. If you are unsure which expenses may qualify, speak with a financial advisor or consult Canada Revenue Agency guidance.
Don’t let financial concerns stop the conversation
Financial considerations are an important part of clinical trial decision-making, but they should not be a barrier to asking questions or exploring options. Understanding potential costs early allows you to plan, access available supports, and make informed choices alongside your care team. With clear communication, proactive coordination, and the right guidance, many patients are able to find solutions that make participation feasible. Exploring clinical trials is part of advocating for your care, and financial planning is simply one component of that process.
National and provincial financial and travel assistance programs
Social workers can help navigate the practical side of care
Most hospitals have a social worker on staff who can support patients and families throughout treatment, including those participating in clinical trials. Social workers can help with a wide range of practical needs, such as navigating leaves from work (for either the patient or caregiver), accessing government support programs, or managing financial paperwork related to care and travel.
Whether you are starting cancer treatment or enrolling in a trial, connecting with a social worker early can help reduce stress and ensure you are aware of the resources available to you.
Cost considerations to join a clinical trial outside of Canada
Some clinical trials for new or emerging treatments may not yet be available in Canada.
If you and your oncologist decide to explore a treatment option outside Canada, it is important to understand the potential costs before moving forward.
The trial may cover the investigational treatment and some study-related procedures, but other costs may not be covered.
These may include:
- Travel, accommodation, meals, and local transportation
- Consultation fees or other costs before eligibility is confirmed
- Tests, imaging, or other assessments required by the trial site
- Medical care and appointments outside the trial
- Currency exchange and other cross-border financial considerations
Some trial sites require an in-person consultation before placing a patient on a waitlist, and policies regarding virtual consultations vary by institution and jurisdiction. Consultation fees and wait times can differ significantly across cancer centres and health care institutions.
It can be helpful to contact multiple trial sites to understand their processes, timelines, and fee structures. Exploring institutions beyond major academic centres may also identify sites offering the same trial with different waitlists, cost structures, or financial support programs.
Before proceeding, ask the trial site:
- What costs are covered by the trial?
- What costs will I be responsible for?
- Are financial assistance programs available through the institution or trial?
- What coordination can occur with my local oncology team?
Speaking with your provincial/territorial health authority, private insurer, or a financial advisor may also help clarify what expenses may be reimbursed. As with Canadian trials, hospital-based social workers or financial counsellors may be able to guide you toward available support programs.
Costs can vary widely – don’t rule out the small players!
When exploring a clinical trial, it can be helpful to look at all institutions offering the study, not just the largest or most well-known centres. Different trial sites may follow different processes and have varying fee structures, even when offering the same protocol.
For example, some institutions may require an in-person consultation before adding a patient to a waitlist, while others may offer virtual consultations or allow waitlist placement with more limited upfront requirements. Consultation formats, timelines, and associated costs can vary significantly across centres.
Understanding these differences early can help you make informed decisions and potentially reduce unnecessary travel or expenses. Because international trial-related costs are typically not covered by Canadian health plans, asking detailed questions about consultation requirements and fees in advance is especially important.
Taking time to compare options across trial sites may help identify an approach that is both medically appropriate and financially manageable.
Tips for managing clinical trial participation costs outside of Canada
Careful planning and coordination with your Canadian healthcare team can help you understand potential costs, avoid unnecessary travel and expenses, and make arrangements for care closer to home when possible.
Tests and procedures
Some bloodwork, imaging and other tests may be completed locally in Canada if they are not required to be performed at the trial site. Ask which tests must be completed at the trial site and which can be arranged closer to home to help reduce travel and associated costs.
Supportive medications
Medications to manage side effects may not be provided by the trial. Coordination between your local oncologist and the trial physician may allow these medications to be prescribed and managed in Canada.
Appointment-related costs
Some medical visits or services outside the formal study protocol may not be covered by the trial. Ask in advance which appointments and services are included and whether any may result in additional costs.
Travel, meals, and accommodation
Hospital social workers, financial counsellors, patient advocacy organizations, and local not-for-profit groups may offer guidance or financial assistance. Some international trial sites may also have support programs or grants to help offset travel-related expenses for eligible patients.
Keep detailed records
Keep detailed records of trial-related expenses, including receipts for travel, accommodation, meals, and other costs. These records may be helpful for reimbursement applications, insurance claims, or tax purposes. Tax rules vary depending on your circumstances, so consult Canada Revenue Agency guidance or a qualified tax professional if you have questions.
Tracking potential expenses can help you compare the financial considerations of participating in a clinical trial in Canada versus another country and identify areas where support programs may help offset costs. For an overview of common cost differences and considerations, review our Cost Considerations resource.
How Connor Made His Clinical Trial Costs More Manageable by Planning Early
While many clinical trials cover the cost of the study drug and certain research procedures, other expenses such as travel, lodging, or routine medical care may still apply. Connor’s family learned that understanding these details early helped them plan ahead and explore available support programs.
After the Trial
Participation in a clinical trial may end for several reasons. This can include disease progression while receiving the study treatment, side effects that become difficult to manage, completion of the study protocol, or closure of the trial. You may also choose to withdraw from the study at any time.
What's Next
As with joining a trial, it is important to understand what treatment options may be available after you leave the study. These could include additional approved therapies, a return to a previous therapy, or consideration of a different clinical trial.
Maintaining communication with your local oncologist throughout the trial can help ensure a smoother transition when it is time to move forward with the next step in your treatment.
Follow-Up
Many trials include a follow-up period after treatment ends. During this time, the research team may check in periodically to monitor your health and gather longer-term information about outcomes and side effects. The frequency and duration of follow-up are outlined in the informed consent form.
Sharing Results
The results of a clinical trial may be published in scientific journals or presented at medical conferences. The findings are combined for all participants (presented in aggregate) so that no individual can be identified. This protects your privacy while still sharing the study results.
You can ask the study team if or when results will be shared with participants. In some cases, you may receive individual results related to your own health, depending on the nature of the study.
The Takeaway
Discussing clinical trial options with your oncologist or healthcare team is an important part of your care. Let them know you are interested in research-based treatments and ask whether a clinical trial could be part of your treatment plan. Your oncologist may be aware of trials at your current hospital or recommend one at another centre that better matches your needs. Asking about clinical trials early helps you stay actively involved in your care and ensures that all treatment options are explored.
By participating in a clinical trial, not only could you get access to novel treatments that may benefit your care, but you also offer new hope to others. Whatever path you choose, know that making an informed decision is a powerful step in your care journey.
In a letter Connor wrote to his boys before his passing, he shared some of what he had learned in life about gratitude, self-esteem, hope, legacy, purpose and friends. On hope, Connor shares:
“Hope is powerful. It can turn a negative outcome into a positive one. Hope can make you live longer, it helped me. Hope gives you something positive to think about and act on. Don’t worry about being hopeful about something that ends up not working out. There’s no penalty for hoping and there’s no prize for guessing you’ll fail and then being right”
A fund has been established in Connor’s memory with the goal of continuing to support others with pancreatic cancer get access to novel treatments.
All Resources
In case you missed:
All downloadable resources from Connor’s Playbook:
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