See also our related blog for the Pediatric Preclinical Testing Initiative.

Wednesday, October 19, 2011

Leaving a Legacy - the value of tumor tissue from Autopsy

While a difficult topic, there may be times where a cancer death can have more meaning by improving knowledge of the disease through tissue donations after life.  For the first in a series of publications related to childhood cancer 'Legacy Gifts', see our co-authored paper in the journal Cancer entitled, "The clinical, research, and social value of autopsy after any cancer death: A perspective from the Children's Oncology Group Soft Tissue Sarcoma Committee".

More information can also be found at or our partner website at the Northwest Sarcoma Foundation.  See also our PCB related blog entries on this topic.  

OPEN SCIENCE FORUM:   (updated 04/05/2012, with comments welcome!) 
Below are our academic-community team's intended project milestones for defining a path to survival for the most incurable childhood cancers:

  • begin national dialogue with pediatric oncologists about the topic. 
    • Legacy Gift Workshop presented at Fall 2011 Children’s Oncology Group (COG) meeting, in partnership with two Sandy Smith and Kim Spady, who themselves are cancer survivors presented their families experiences with tissue donation after their sons passed away from brainstem gliomas.  Sandy and Kim are passionate supporters of families on this topic, and have first-hand experience facilitating these types of tissue donations after life (at autopsy).  
  • understand and publish the potential barriers to autopsy as understood from interviews of families conducted under our NCI-funded project, NIH/NCI R01CA133229-04S2.
    • This study is the successor to the position paper we published for the COG Soft Tissue Sarcoma committee:
      • Sheri L. Spunt, Sara O. Vargas, Cheryl M. Coffin, Stephen X. Skapek, David M. Parham, Joan Darling, Douglas S. Hawkins, Charles Keller.  The Clinical, Research, and Social Value of Autopsy after Any Cancer Death:  A Perspective from the Children’s Oncology Group Soft Tissue Sarcoma Committee.  Cancer, 2011 Oct 17 epub [PMID 22006470]
  • create a shift in culture among medical care providers by seeking to have an educational session on how to approach the topic of autopsy with families at the COG Fall 2012 meeting.
    • This is a successor to the Fall COG 2010 workshop, OVERCOMING AUTOPSY BARRIERS IN PEDIATRIC CANCER RESEARCH: Providing Hope For Tomorrow’s Cures described above.
  • optimize to work in parallel with other websites such as, having peer education & caregiver guidelines as well as assistance for families via an online single-point-of-contact.
  • write a Children’s Oncology Group autopsy banking protocol for all childhood cancers by multi-institutional collaboration by Spring 2012.
    • All specimens would be sent to the COG Biorepository in Columbus, Ohio.
    • Access to any specimen in the COG Biorepository would require COG disease subcommittee scientific peer review to ensure the study request was scientifically rigorous and used only the amount of sample absolutely required (in order to increase the number of studies per tissue collection).
  • seek a foundation that would help fund the costs of autopsy collection kits, as well as a reimbursement to COG institutions for the logistics of packaging and shipping autopsy collections by Summer 2012.
  • encourage broad use of these highly valuable, high informative tissue specimens starting Fall 2012 so that the 1 in 5 children not cured of cancer may someday survive his/her cancer.
01/09/2012:  manuscript for the NCI-funded study of autopsy barriers to be submitted today.
03/28/2012:  Effort to create an autopsy educational session for the Fall COG session instead suggested to be made an educational session at the ASPHO conference.
04/05/2012:  Consortium grant for COG-based autopsy program submitted today to St Baldrick's Foundation.
05/17/2012:  Jen presents Legacy Gift study at APOSW national conference in Portland.  
06/26/2012:  Consortium grant for COG-based autopsy program received 2 overwhelmingly positive reviews, and one very brief non-positive review.  Project will not be funded.  Effort will be revised and resubmitted for funding elsewhere.  Copy of the submitted grant and reviews are available on request.  
06/27/2012:  Manuscript submitted to a scientific journal is now in revision, and will be resubmitted within the week.
08/16/2012:  Manuscript accepted to Pediatric Blood & Cancer, the leading journal in pediatric hematology-oncology.  Congratulations to Jen and all co-authors!
09/06/2012:  Rally Foundation takes a bold new step to bring this effort to a national level!
09/26/2012:  paper is now published online here.
02/01/2013:  See the editorial, "Pediatric autopsy consent: Helping families create hope out of despair", written in Pediatric Blood & Cancer here (it accompanies our paper's print version is the same issue).  


zach said...

can any tumor be banked? not just at death? My son was removed at the end of treatment. should that have been banked? I t had mostly dead tissue but not all. What about relapsed tissue samples or mets else in the body.

Charles said...

hi, Zach. Yes - most of the COG protocols allow specimens at the end of treatment (or at relapse) to be banked by the centralized COG Biorepository. If any viable tissue is present, it might be of real value to research because those tumor cells survived all the treatment given - and we need to understand why!

Also, a key advantage to the COG Biorepository over institutional tumor banks is that the tissue is available to any researcher (in the world), so long as they can satisfy the scientific peer-review process that ensures the use of the material will be productive, and that only the amount needed is used (so others can do additional studies on what is leftover in the Biorepository). Charles