Table 1 PPI information associated with the 20 breast cancer trials
From: Patient and Public Involvement (PPI) in outcome selection in breast cancer and nephrology trials
Trial IDs | Trial registration number | PPI information in study publication | PPI Information in the study protocol | PPI information in supplementary files |
|---|---|---|---|---|
Trial 1 | No | No | No | |
Trial 2 | “The dichotomous cutoff was chosen by a consensus of all TRANSBIG partners, including patient representatives, to define a situation in which the absolute benefit of chemotherapy would balance its associated side effects”. | Steering Committee: representatives from EORTC, TRANSBIG, IDDI, NKI, Agendia, IGR, FNCLCC, NCC/Gs and patient’s representative organizations. | No | |
Trial 3 | No | No | No | |
Trial 4 | No | No | No | |
Trial 5 | No | No | No | |
Trial 6 | No | No | No | |
Trial 7 | No | No | No | |
Trial 8 | No | No | No | |
Trial 9 | No | No | No | |
Trial 10 | No | No | No | |
Trial 11 | No | No | No | |
Trial 12 | No | No | No | |
Trial 13 | No | The corresponding author has moved institute and was not in a position to supply the protocol. | No | |
Trial 14 | No | No | No | |
Trial 15 | No | No | No | |
Trial 16 | No | No | No | |
Trial 17 | No | A Public and Patient Involvement event was hosted at Queen Mary University of London in January 2020, to collaboratively discuss with breast cancer research participants their views on the study procedures specifically relating to the collection of identifiable data for use in future analyses. An open discussion on how participants felt about the study procedures specifically on long-term follow-up data collection was initiated. There was a very positive response where patients felt happy to be included in such long-term follow-up research, their data to be collected as described in this study protocol and their data used for analyses. Patients commented on the appropriateness to conduct analyses with the use of long-term follow-up data using their personal identifiable data for linkage with these registries. We also made sure to highlight that under no circumstances identifiable data would be released to a third party and that all data will always remain in a secure and locked environment. | No | |
Trial 18 | No | No | No | |
Trial 19 | No | No | No | |
Trial 20 | No | No | No |