Progress Tracker Breast Cancer Registry: A Breast Cancer Canada initiative.
Bibliographic record
Abstract
e23018 Background: Significant gaps exist in the collection of real-world evidence and validated patient-reported outcome measures (PROMs) data from individuals with breast cancer. Variations in treatment and surveillance care across regional jurisdictions present knowledge gaps across diverse populations which remain difficult to study. The PROgress Tracker Breast Cancer Registry, a large, prospective Canadian PROMs cohort study aims to identify care gaps through the lived patient experience to inform patient-centered care and new research directions. Methods: PROgress Tracker is a real-world, longitudinal, non-interventional PROMs registry directed by Breast Cancer Canada, a registered non-profit patient-led organization, and data managed by University of Calgary’s POET program. Launched in October 2023, this registry aims to enroll up to 50,000 adult Canadian participants with a histologic diagnosis of in-situ or invasive breast cancer (stage 0 through IV) within 10 years. A volunteer-led peer-to-peer support model, based in regional and provincial hubs across Canada, facilitates participant recruitment, engagement, and retention. Individuals who self-identify for study inclusion provide informed consent, demographic and socioeconomic profile, and clinical information on their breast cancer diagnosis. Every three months (and up to 10 years) a bilingual digital platform to reduce barriers to access is used to provide all PROgress Tracker participants 8 validated PROMs to capture evolving measures of self-efficacy for wellbeing, symptoms and overall global functioning. Based on treatment, up to 10 additional PROMs to assess the immediate adverse effects and long-term impacts of treatment are collected. PROgress Tracker has the additional capacity to link to external ethics-approved studies to investigate clinical outcome and healthcare utilization metrics for participants consenting to additional studies. Results: In progress. Conclusions: PROgress Tracker represents Canada’s first national PROMs breast cancer registry. Its unique design and implementation by a patient-led research organization helps fill gaps in current knowledge through longitudinal follow up of patients prior to, during, and after cancer care, and from the time from diagnosis through active treatment, long-term survivorship, and/or palliative care. The PROgress Tracker Registry will comprehensively gather the validated real-world data information rarely collected in in the traditional clinical or trial-based research setting using a novel self-enroll design and digital process. Such information is crucial to support evidence-based decision making to inform patient-centered healthcare change. This allows comparison across Canadian jurisdictions, is scalable to other jurisdictions around the world and further explores the utility of electronic PROMs data capture within a diverse patient population.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.003 | 0.012 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.003 | 0.006 |
| Science and technology studies | 0.003 | 0.001 |
| Scholarly communication | 0.003 | 0.001 |
| Open science | 0.003 | 0.003 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.072 | 0.018 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".