Returning Aggregate Results to Research Participants/Families: Updated Recommendations From the Children's Oncology Group
Bibliographic record
Abstract
In 2012, the Children's Oncology Group (COG) issued 18 recommendations for returning aggregate research results to participants. This manuscript reviews the Return of Results (ROR) Committee's progress in implementing these recommendations. A multidisciplinary review assessed implementation status, identified challenges, and incorporated relevant literature to propose updates and future research directions. Fourteen recommendations were fully or partially implemented, three were deemed infeasible, and one is planned for future action. Successful implementation was supported by infrastructure, education, and ongoing quality improvement. This experience offers a practical model for other cooperative research groups aiming to return research results beyond clinical trials.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
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 | 0.537 | 0.585 |
| Meta-epidemiology (narrow) | 0.002 | 0.003 |
| Meta-epidemiology (broad) | 0.004 | 0.011 |
| Bibliometrics | 0.009 | 0.006 |
| Science and technology studies | 0.004 | 0.005 |
| Scholarly communication | 0.011 | 0.012 |
| Open science | 0.012 | 0.016 |
| Research integrity | 0.017 | 0.021 |
| Insufficient payload (model declined to judge) | 0.006 | 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; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
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".