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Returning Aggregate Results to Research Participants/Families: Updated Recommendations From the Children's Oncology
Kathleen S Ruccione1, Stacey Crane2, Tina Bocking3
1College of Nursing & Health Sciences, Azusa Pacific University, Azusa, California, USA.
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.
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