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Overcoming autopsy barriers in pediatric cancer research

Authors

  • Jennifer L. Alabran Msc,

    1. Pediatric Cancer Biology Program, Papé Family Pediatric Research Institute, Oregon Health & Science University, Portland, Oregon
    2. Department of Pediatrics, Oregon Health & Science University, Portland, Oregon
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  • Jody E. Hooper MD,

    1. Department of Pathology, Oregon Health & Science University, Portland, Oregon
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  • Melissa Hill,

    1. Northwest Sarcoma Foundation, Portland, Oregon
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  • Sandra E. Smith,

    1. Parent Advocates
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  • Kimberlee K. Spady,

    1. Parent Advocates
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  • Lara E. Davis MD,

    1. Pediatric Cancer Biology Program, Papé Family Pediatric Research Institute, Oregon Health & Science University, Portland, Oregon
    2. Department of Pediatrics, Oregon Health & Science University, Portland, Oregon
    3. Division of Pediatric Hematology/Oncology, Oregon Health & Science University, Portland, Oregon
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  • Lauren S. Peterson BS,

    1. Pediatric Cancer Biology Program, Papé Family Pediatric Research Institute, Oregon Health & Science University, Portland, Oregon
    2. Department of Pediatrics, Oregon Health & Science University, Portland, Oregon
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  • Suman Malempati MD,

    1. Department of Pediatrics, Oregon Health & Science University, Portland, Oregon
    2. Division of Pediatric Hematology/Oncology, Oregon Health & Science University, Portland, Oregon
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  • Christopher W. Ryan MD,

    1. Knight Cancer Institute, Oregon Health & Science University, Portland, Oregon
    2. Division of Hematology/Oncology, Department of Medicine, Oregon Health & Science University, Portland, Oregon
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  • Rae Acosta RN,

    1. Department of Pediatrics, Oregon Health & Science University, Portland, Oregon
    2. Division of Pediatric Hematology/Oncology, Oregon Health & Science University, Portland, Oregon
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  • Sheri L. Spunt MD,

    1. Department of Oncology, St. Jude Children's Research Hospital and Department of Pediatrics, University of Tennessee Health Science Center, Memphis, Tennessee
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  • Charles Keller MD

    Corresponding author
    1. Pediatric Cancer Biology Program, Papé Family Pediatric Research Institute, Oregon Health & Science University, Portland, Oregon
    2. Department of Pediatrics, Oregon Health & Science University, Portland, Oregon
    • Pediatric Cancer Biology Program, Papé Family Pediatrics Research Institute, Department of Pediatrics, Oregon Health & Science University, 3181 S.W. Sam Jackson Park Road, MC-L321, Portland, OR 97239-3098.===

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  • C.K. and C.W.R. are members of the Board of Directors of the Northwest Sarcoma Foundation, a co-recipient of NCI R01 CA 133229-04S2.

Abstract

Background

More than 13,000 children annually in the United States and Canada under the age of 20 will be diagnosed with cancer at a mortality approaching 20% 1,2. Tumor samples obtained by autopsy provide an innovative way to study tumor progression, potentially aiding in the discovery of new treatments and increased survival rates. The purpose of this study was to identify barriers to autopsies and develop guidelines for requesting autopsies for research purposes.

Procedure

Families of children treated for childhood cancer were referred by patient advocacy groups and surveyed about attitudes and experiences with research autopsies. From 60 interviews, barriers to autopsy and tumor banking were identified. An additional 14 interviews were conducted with medical and scientific experts.

Results

Ninety-three percent of parents of deceased children did or would have consented to a research autopsy if presented with the option; however, only half of these families were given the opportunity to donate autopsy tissue for research. The most significant barriers were the physicians' reluctance to ask a grieving family and lack of awareness about research opportunities.

Conclusions

The value of donating tumor samples to research via an autopsy should be promoted to all groups managing pediatric cancer patients. Not only does autopsy tumor banking offer a potentially important medical and scientific impact, but the opportunity to contribute this Legacy Gift of autopsy tumor tissue also creates a positive outlet for the grieving family. Taking these findings into account, our multidisciplinary team has developed a curriculum addressing key barriers. Pediatr Blood Cancer 2013;60:204–209. © 2012 Wiley Periodicals, Inc.

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