Mariko DeWire1, Craig Erker2, Trent R Hummel3, Lionel M L Chow4, Peter de Blank3, Ralph Salloum3, Natasha Pillay-Smiley3, Lindsey Hoffman5, Elizabeth Gilger3, Maureen Gallagher3, Lori Driver3, Dinah Meister3, Heather Ward3, Rachid Drissi3,6, Shiva Senthil Kumar3,7, Satarupa Sengupta3,8, Bridget Kikta3, Wanda Meriwether3, Susan Jelinek3, Anthony Asher3, Blaise Jones9, James Leach9, Lili Miles10, Christine Fuller11, Maryam Fouladi3,12. 1. Division of Oncology, Department of Pediatrics College of Medicine, Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, University of Cincinnati, 3333 Burnet Avenue, Cincinnati, OH, 45229-3026, USA. Mariko.dewire@cchmc.org. 2. Division of Hematology/Oncology, Department of Pediatrics, IWK Health Centre and Dalhousie University, Halifax, Nova Scotia, Canada. 3. Division of Oncology, Department of Pediatrics College of Medicine, Brain Tumor Center, Cancer and Blood Diseases Institute, Cincinnati Children's Hospital Medical Center, University of Cincinnati, 3333 Burnet Avenue, Cincinnati, OH, 45229-3026, USA. 4. Department of Hematology/Oncology, Dayton Children's Hospital, Dayton, OH, USA. 5. Department of Hematology/Oncology, Phoenix Children's Hospital, Phoenix, AZ, USA. 6. Center for Childhood Cancer & Blood Disorders, Nationwide Children's Hospital, Columbus, OH and The Ohio State University College of Medicine, Columbus, OH, USA. 7. Center for Childhood Cancer & Blood Disorders, Nationwide Children's Hospital, Columbus, OH, USA. 8. Division of Research, Department of Surgery, College of Medicine, University of Cincinnati, Cincinnati, OH, USA. 9. Department of Radiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. 10. Department of Pathology and Laboratory Medicine, Nemours Children's Health System, Orlando, FL, USA. 11. Division of Pathology and Laboratory Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA. 12. Hematology/Oncology &, BMT, Nationwide Children's Hospital, The Ohio State University College of Medicine, ColumbusColumbus, OHOH, USA.
Abstract
BACKGROUND: While autopsy-repository programs with a variety of pediatric central nervous system (CNS) tumor types are a critical resource for preclinical neuro-oncology research, few exist and there is no published guidance on how to develop one. The goal of this prospective Pediatric Brain Tumor Repository (PBTR) study was to develop such a program at Cincinnati Children's Hospital Medical Center (CCHMC) and then publish the quantitative and experiential data as a guide to support the development of similar programs. METHODS: Protocols and infrastructure were established-to educate oncologists and families, establish eligibility, obtain consent, address pre- and post-autopsy logistics (e.g., patient and tissue transportation), process and authenticate tissue samples, and collect and analyze data. RESULTS: Of the 129 pediatric CNS tumor patients at CCHMC who died between 2013 and 2018, 109 were eligible for our study. Of these, 74% (81 of 109) were approached for PBTR donation, and 68% (55 of 81) consented. In the final year of the study, approach and consent rates were 93% and 85%, respectively. Median time from death to autopsy (postmortem interval, PMI) was 10 h (range, 1.5-30). In the outpatient setting, PMI increased with distance (from the hospice/home where the patient died to CCHMC). In all patients, PMI appeared to be lower, when consent was obtained more than 24 h before death. CONCLUSIONS: Procurement of autopsy specimens need not be a barrier in neuro-oncology research. Regional centers, strict timing-of-consent, patient education, and dedicated staff are all needed to minimize PMI and, thereby, increase the value of the procured tissue for an array of basic and translational research applications.
BACKGROUND: While autopsy-repository programs with a variety of pediatric central nervous system (CNS) tumor types are a critical resource for preclinical neuro-oncology research, few exist and there is no published guidance on how to develop one. The goal of this prospective Pediatric Brain Tumor Repository (PBTR) study was to develop such a program at Cincinnati Children's Hospital Medical Center (CCHMC) and then publish the quantitative and experiential data as a guide to support the development of similar programs. METHODS: Protocols and infrastructure were established-to educate oncologists and families, establish eligibility, obtain consent, address pre- and post-autopsy logistics (e.g., patient and tissue transportation), process and authenticate tissue samples, and collect and analyze data. RESULTS: Of the 129 pediatric CNS tumorpatients at CCHMC who died between 2013 and 2018, 109 were eligible for our study. Of these, 74% (81 of 109) were approached for PBTR donation, and 68% (55 of 81) consented. In the final year of the study, approach and consent rates were 93% and 85%, respectively. Median time from death to autopsy (postmortem interval, PMI) was 10 h (range, 1.5-30). In the outpatient setting, PMI increased with distance (from the hospice/home where the patient died to CCHMC). In all patients, PMI appeared to be lower, when consent was obtained more than 24 h before death. CONCLUSIONS: Procurement of autopsy specimens need not be a barrier in neuro-oncology research. Regional centers, strict timing-of-consent, patient education, and dedicated staff are all needed to minimize PMI and, thereby, increase the value of the procured tissue for an array of basic and translational research applications.
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