Returning Aggregate Results to Research Participants/Families: Updated Recommendations From the Children's Oncology Group

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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Publication Details

Journal
Pediatric Blood & Cancer
Published
2025-12-27
DOI
https://doi.org/10.1002/1545-5017.70066
Primary Topic
Childhood Cancer Survivors' Quality of Life
Type
article
Field-Weighted Citation Impact
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article

Returning Aggregate Results to Research Participants/Families: Updated Recommendations From the Children's Oncology Group

Tina Bocking, Chris Williams‐Hughes, Conrad V. Fernandez, Beth Fisher et al.
Pediatric Blood & Cancer
Childhood Cancer Survivors' Quality of Life
article

Returning Aggregate Results to Research Participants/Families: Updated Recommendations From the Children's Oncology Group

Tina Bocking, Chris Williams‐Hughes, Conrad V. Fernandez, Beth Fisher, Wendy Pelletier, Rebecca D. Pentz, Blair Segers, Kimberly A. Pyke‐Grimm, Joan Darling, Stacey Crane, Kathleen S. Ruccione, Gina Martin, Heidi Pusztay
article en

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.

Pediatric Blood & CancerVol. 73(2)
Dalhousie University (CA), Children's Hospital of Philadelphia (US), Emory University (US), University of Calgary (CA), Augusta University (US), Cardinal Glennon Children’s Medical Center (US), Children's Oncology Group (US), Stanford Medicine (US), Eion (Canada) (CA), The University of Texas Health Science Center at Houston (US), Azusa Pacific University (US)
Industry, innovation and infrastructure
Openalex Percentile: Top 18%
Childhood Cancer Survivors' Quality of Life
DOISourceOpenAlex
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Returning Aggregate Results to Research Participants/Families: Updated Recommendations From the Children's Oncology Group — Tina Bocking, Chris Williams‐Hughes, et al. · Pediatric Blood & Cancer (2025) | TGRS Research Map | TGRS