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A systematic literature review to identify ethical, legal and social responsibilities of nonprofit organizations when funding clinical trials in pediatric cancer
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  • Vasiliki Rahimzadeh,
  • Susan Wolfert,
  • Victoria Buenger,
  • Cindy Campbell,
  • Robin French,
  • Donna Ludwinski,
  • Amy Weinstein,
  • Caitlyn Barrett
Vasiliki Rahimzadeh
Stanford University

Corresponding Author:vrahim@stanford.edu

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Susan Wolfert
Coalition Against Childhood Cancer
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Victoria Buenger
Coalition Against Childhood Cancer
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Cindy Campbell
Coalition Against Childhood Cancer
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Robin French
Coalition Against Childhood Cancer
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Donna Ludwinski
Solving Kids' Cancer
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Amy Weinstein
Coalition Against Childhood Cancer
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Caitlyn Barrett
Coalition Against Childhood Cancer
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Abstract

Nonprofit organizations (NPOs) play critical roles as funding sources, research partners, and disseminators of emerging drug developments in pediatric cancer, yet the literature offers limited understanding or guidance of ethical best practices and processes. We conducted a systematic search for peer reviewed articles, commentaries, newsletters, and white papers indexed in the PubMed and Web of Science databases to identify the ethical, legal, and social responsibilities of NPOs to i) patients/families, ii) researchers, iii) sponsors, and iv) donors when funding clinical trials. Fifty-four articles met the inclusion criteria. Minimizing conflicts of interest, ensuring transparent reporting of trial endpoints, and communicating with families about trial opportunities emerged as key themes. We identified critical gaps in the literature related to negotiating research partnerships, setting trial priorities and establishing best ethical practices in the emerging field of venture philanthropy. Results informed points to consider for NPOs when funding pediatric cancer clinical trials going forward.
05 Apr 2022Submitted to Pediatric Blood & Cancer
05 Apr 2022Submission Checks Completed
05 Apr 2022Assigned to Editor
07 Apr 2022Reviewer(s) Assigned
18 Apr 2022Review(s) Completed, Editorial Evaluation Pending
19 Apr 2022Editorial Decision: Revise Minor
26 May 20221st Revision Received
26 May 2022Submission Checks Completed
26 May 2022Assigned to Editor
30 May 2022Review(s) Completed, Editorial Evaluation Pending
30 May 2022Editorial Decision: Accept
Sep 2022Published in Pediatric Blood & Cancer volume 69 issue 9. 10.1002/pbc.29854