Abstract P1-10-07: PROgress Tracker Breast Cancer Registry: Feasibility of a Longitudinal Peer-Led, National Patient-Reported Outcomes (PRO) Registry
Bibliographic record
Abstract
Abstract Objective: PROgress Tracker Breast Cancer Registry is a national longitudinal, non-interventional patient-reported outcome measure (PROMs) registry, using a novel, peer-to-peer engagement and retention model directed by patient advocacy group Breast Cancer Canada and database managed by the POET Program. Here, we report initial PROMs results, demonstrating feasibility to amplify the patient voice and inform evidence-based care across Canada. Methods: PROgress Tracker, launched in October 2023 has a 10-year enrollment goal of Canadians with Stage 0-IV breast cancer. Participants self-refer for registry inclusion and complete a series of validated PROMs via a digital platform every three months for up to 10 years. Participants self-report demographic, socioeconomic and clinical data (age, social structure, employment, stage, molecular tumor markers, treatments, treatment-related impacts (adverse events, health-related quality of life) and global measures of wellbeing (mental health, social support, financial wellbeing, sexuality, physical functioning) through a series of questionnaires and PROMs. PROMs are dynamic, tailored to the participant’s current status at each data collection timepoint. Results: To date, 485 individuals have enrolled in PROgress Tracker, representing all Canadian geographical regions, including 17% in rural/remote locations. Three-month follow up survey response was 65%. Socioeconomic data was reported by 399 participants: 94% identify as Caucasian, 28% report an active caregiving role to children or others, 61% are currently employed; 52% reported financial stress. 251 participants provided diagnostic, global functioning and treatment-specific PROMs data. Diagnoses spanned 1997-2024 (median 2021). 76% reported early/localized stage (Stage 0 - II) disease at diagnosis. 45% reported receiving BRCA mutation testing, of which 15% were positive; 7% report a recurrence, and 4% have metastatic disease. 91% received oncological resection, 71% radiation therapy to the breast (RT); 76% systemic anti-cancer therapy (SACT) (hormonal, cytotoxic, immune checkpoint inhibitors or targeted therapies). Participants reported impairment in overall health-related quality of life (median FACT-B Total score 82.6 out of 148). 16% of participants reported moderate-severe anxiety, while 22% reported moderate-severe insomnia. 36 participants currently on SACT reported at least one adverse event, with 22 (61%) reporting adverse events ‘frequently’ or ‘always’ [PRO-CTCAE Systemic Therapy Subset]. Participants ever having radiotherapy (RT) reported moderate function (median 52) and low symptom (median 28) scores [EORTC-QLQ-BR23]; 78% of participants currently receiving RT reported mild adverse events, while 44% reported serious adverse events. Conclusion: Capturing the lived experience throughout a breast cancer journey and integrating the use of validated PROMs into precision medicine is integral to driving patient-centered change in healthcare systems. Initial directional data from PROgress Tracker has demonstrated ability to capture a wide range of real-world evidence, suggesting that longitudinal digital capture, peer-to-peer involvement and real-time PROMs acquisition is feasible and can yield data of appropriate caliber to inform best practice, health care policy, and identify additional supports to improve outcomes. Efforts in recruitment and retention strategies are a current focus. Citation Format: Omar F. Khan, Doris Howell, Shaniah Leduc, Kimberly Carson, Michelle Dean, Amanda JW Gibson. Progress Tracker Breast Cancer Registry: Feasibility of a Longitudinal Peer-Led, National Patient-Reported Outcomes (PRO) Registry [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2024; 2024 Dec 10-13; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2025;31(12 Suppl):Abstract nr P1-10-07.
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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 | 0.041 | 0.049 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.001 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.003 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.014 | 0.005 |
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".