ArticleThe Journal of pediatrics2013
Bereaved parents' intentions and suggestions about research autopsies in children with lethal brain tumors.
Article in The Journal of pediatrics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05120518 (Post Mortem Tissue Donation of Pediatric Tumor Tissues and Cells), which is not on this map. Cited by 14 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Post Mortem Tissue Donation of Pediatric Tumor Tissues and Cells
Who cites it
14 citing papers in PubMed, 3 syntheses or guidelines pooled it, 28 citations in OpenAlex.
- Determinants of Interest-Holder Perspectives Toward Post-Mortem Tissue Donation in Oncology: A Systematic Review.Psycho-oncology · 2026Pooled it
- Factors affecting uptake of postmortem examination in the prenatal, perinatal and paediatric setting.BJOG : an international journal of obstetrics and gynaecology · 2018Pooled it
- The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review.Palliative medicine · 2017Pooled it
- Factors Associated with Autopsy Consent in Pediatric Oncology: A 10-Year Review.Current oncology (Toronto, Ont.) · 2026Article
- Pediatric Postmortem Tissue Donation in the Confines of a Pandemic: A Model of Collaboration.Pediatric neurology · 2023Article
- "It Can Be Hard But It's Not Bad": Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research.Journal of palliative medicine · 2021Article
- Overcoming barriers to establishing autopsy procurement programs in pediatric patients with central nervous system tumors: a call to develop regional centers.Journal of neuro-oncology · 2021Article
- Factors Influencing Acceptance of Post-Mortem Examination of Children at a Tertiary Care Hospital in Nairobi, Kenya.Annals of global health · 2019Article
- Rapid autopsy of a patient with recurrent anaplastic ependymoma.Palliative & supportive care · 2018Article
- Improving Care in Pediatric Neuro-oncology Patients: An Overview of the Unique Needs of Children With Brain Tumors.Journal of child neurology · 2016Review
- Bereavement Follow-Up After the Death of a Child as a Standard of Care in Pediatric Oncology.Pediatric blood & cancer · 2015Review
- Unique genetic and epigenetic mechanisms driving paediatric diffuse high-grade glioma.Nature reviews. Cancer · 2014Review
- What do parents want to know when considering autopsy for their child with cancer?Journal of pediatric hematology/oncology · 2014Article
- Parents' experiences of postmortem tumor donation for high-grade gliomas: benefits and suggested improvements.Neuro-oncology advancesArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 2 institutions in 1 country.
Funding
Abstract
objectiveTo determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY
designA prospective multicenter study was conducted to collect tumor tissue by autopsy of children with diffuse intrinsic pontine glioma. In the study, parents completed a questionnaire after their child's death to describe the purpose for, hopes (ie, desired outcomes of), and regrets about their participation in autopsy-related research. Parents also suggested ways to improve autopsy-related discussions. A semantic content analytic method was used to analyze responses and identify themes within and across parent responses.
resultsResponses from 33 parents indicated that the main reasons for participating in this study were to advance medical knowledge or find a cure, a desire to help others, and choosing as their child would want. Parents hoped that participation would help others or help find a cure as well as provide closure. Providing education/anticipatory guidance and having a trusted professional sensitively broach the topic of autopsy were suggestions to improve autopsy discussions. All parents felt that study participation was the right decision, and none regretted it; 91% agreed that they would make the choice again.
conclusionBecause autopsy can help advance scientific understanding of the disease itself and because parents reported having no regret and even cited benefits, researchers should be encouraged to continue autopsy-related research. Parental perceptions about such studies should be evaluated in other types of pediatric diseases.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.