From Patient Perspectives to Pan-Canadian Data
October 23, 2025
Breast Cancer Canada’s PROgress Tracker registry collects real-time data directly from breast cancer patients and uses it to inform research, treatment, and policy.
Patient-reported outcomes, or PROs, reflect how patients perceive their treatment experience, which makes them inherently subjective. But in that subjectivity lies their greatest power: PROs give us a window into what matters most to patients, helping to supplement the outcomes important to clinicians, clinical trialists, and regulators in their orbit.
PROs carry special weight in breast cancer, where treatment often involves taxing drug regimens and surgical procedures that impact well-being as much as survival. At the same time, PROs reporting in breast cancer have suffered from a lack of consistency and standardization.
A group of visionaries at Breast Cancer Canada (BCC) saw an opportunity to bridge this gap. Enter PROgress Tracker, a national registry-based study designed to collect and analyze PROs and use the resulting insights to advance breast cancer research.2
“Breast surgeons generally do a good job collecting PRO data, like asking patients about their satisfaction with their prosthesis or surgical scars,” says Shaniah Leduc, Board Chair at BCC and one of the architects of the project. “We’ve done a much poorer job tracking PROs for chemotherapy or hormone therapy, which can have highly bothersome side effects. That’s where the biggest gap exists.”
Like most initiatives, PROgress Tracker required not just vision, but know-how. “The physicians we approached said they loved the idea, but didn’t have the resources to run a registry,” Leduc recalls. “My colleagues and I had an ‘aha’ moment and realized we could take the lead on it.” As a former oncology nurse and research coordinator, Leduc had just the right mix of experience, skills, and connections to get the project off the ground, starting with soliciting input from experts in clinical oncology and PROs and securing a Contract Research Organization (CRO) to handle operations.
Subcontracting a CRO to manage a Canada-wide database with a national ethics approval process brings a distinct advantage to the project: a national scope. According to Leduc, “no other breast cancer centre can do that, because they can’t share information from centre to centre and province to province.”
Similarly, while no individual cancer centre could have launched the study, Breast Cancer Canada (BCC) had just the right profile for the job. As the country’s only national breast cancer charity, BCC has a dual role as a research funder and patient advocacy group, giving it the capacity to build a pan-Canadian database and ensure the PROs it collects inform policy, research, and care.
The long game
Launched in 2023, PROgress Tracker welcomes people diagnosed with breast cancer at any stage and any point in their journey. Participants, who can enroll online, complete questionnaires four times a year. The information gets fed into a database that clinicians and researchers can use to analyze how patients respond to different treatments and how they experience these treatments. Participants can step away from the registry at any time.
The data collection and analysis will continue for at least a decade, with the possibility of extension. “Once patients have reached the five-year mark, they are no longer systematically followed, even though they can still develop complications or recurrences,” Leduc explains. “We need a long study to collect this information.”
Even for those who – like 60 percent of breast cancer patients – do not have a recurrence, “tracking long-term PROs gives us information that may result in meaningful health science and policy changes,” says Leduc. For example, a treatment with fewer side effects could help preserve employment and employability over time, thus increasing its value in the reimbursement ecosystem. “Right now, none of these domino effects get collated. We’re in a situation where we don’t know what we don’t know.”
“Tracking long-term PROs gives us information that may result in meaningful health science and policy changes.”
Shaniah Leduc, Board Chair, Breast Cancer Canada
In October 2024, PROgress Tracker released its first analysis of the data, and some of the findings were surprising to the team. “We learned that a breast cancer diagnosis led to greater ‘financial toxicity’ [hardship] in patients under age 55 than in older ones,” says Leduc. “This came as a shock to us, because we tend to think that people in their working years have greater access to financial resources such as employer health plans.”
Drilling down
While the initiative sweeps across time and place, the PROs themselves focus on patients’ day-to-day experience. Each questionnaire asks patients about their physical, psychosocial, and sexual health over the past two weeks. “The questions go beyond the surface level,” says Leduc, citing lymphedema as an example. “It’s one thing to ask a patient if they’re having a problem with lymphedema, but we go deeper: are they having trouble lifting a mug, putting on a shirt, doing up their buttons?”
The questions reflect each patient’s treatment arc. Patients undergoing radiation, for example, receive a subset of questions about adverse events such as burning, blistering, irritation, and skin discoloration, as well as their emotional response to the procedure. A patient on IV treatment receives nuanced questions about tolerability and dosing. The registry also takes a deep dive into complementary/alternative treatments and their side effects, seeking to capture aspects of self-directed care that patients do not always disclose to their health providers.
Most new projects harness AI in some way, and PROgress Tracker is no exception. “We’re looking to use AI tools to make it easier for patients to register for the study – but not for the bulk of the study itself,” says Angela Marlatt, VP, Mission & Advocacy at BCC. As Marlatt explains, such tools remove medical literacy barriers, so patients who lack the terminology to describe their diagnosis or treatment can still participate. “The more participants we have, the better we can drill down into populations with rare subtypes and use the data in impactful ways,” she says.
“The more participants we have, the better we can drill down into populations with rare subtypes and use the data in impactful ways.”
Angela Marlatt, VP, Mission & Advocacy, Breast Cancer Canada
This raises the question: How do participants learn about PROgress Tracker in the first place? As described by Marlatt, the multipronged outreach strategy includes announcing the initiative on social media and in newsletters, harnessing BCC’s volunteer hubs to spread the word, and enlisting oncologists to inform their breast cancer patients about the initiative. PROgress Tracker has also teamed up with a Quebec-based cancer research group to ensure the province has equitable representation in the database. To date, about 800 patients have joined the registry, and Marlatt anticipates the number will keep growing. “We’re in ‘recruit, recruit, recruit’ mode.”
Since the study’s inception, BCC has publicized its evolution at major academic events such as the American Society of Clinical Oncology conference and the Breast Cancer Symposium. “We send out abstracts for peer review to make sure the study maintains its quality and credibility,” says Kim Carson, BCC’s CEO. “We’re also using the data – for example, what we learned about financial toxicity – in our government relations work.” Industry partners benefit from access to lived-experience data that could help support an HTA submission.
Marlatt affirms that the initiative would not have seen the light without the support of BCC donors – and of patients themselves. “Thousands of Canadians are paying it forward to the next person who receives a breast cancer diagnosis. We’re very grateful.”
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