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Published on: August 1, 2019
Developing a core outcome set for the NeuroPoint Alliance Quality Outcomes Database Pediatric Tumor Surgery Registry:
David S Hersh1,2,3, Anthony L Asher4, Mohamad Bydon5
1Department of Neurosurgery, UConn School of Medicine, Farmington, CT, USA. dhersh@connecticutchildrens.org.
Journal of Neuro-Oncology
|May 12, 2026
Summary
A Delphi study defined core outcomes for the NeuroPoint Alliance (NPA) Quality Outcomes Database (QOD) Pediatric Tumor Surgery Registry. This establishes a foundation for standardized pediatric neurosurgery data collection.
Area of Science:
- Pediatric Neurosurgery
- Surgical Oncology
- Data Science
Background:
- Multi-institutional data collection in pediatric neuro-oncology is limited.
- Significant variation exists in operative and perioperative management.
- The NeuroPoint Alliance (NPA) Quality Outcomes Database (QOD) Pediatric Tumor Surgery Registry aims to address this gap.
Purpose of the Study:
- To define a core outcome set for the NPA QOD Pediatric Tumor Surgery Registry.
- To establish a consensus-based foundation for standardized data collection.
- To facilitate prospective, multicenter pediatric neurosurgical oncology research.
Main Methods:
- A modified Delphi process was employed with pediatric neurosurgeons.
- A 9-point Likert scale was used to rate candidate data elements.
- Consensus criteria were predefined for inclusion and exclusion of items.
Main Results:
- 66 items achieved consensus across three rounds of evaluation.
- Round 1 yielded 48 included items; Round 2 added 13 more.
- A final virtual round included 4 additional consensus items.
Conclusions:
- A consensus-based core outcome set was successfully established.
- This provides a practical foundation for the NPA QOD registry.
- Enables standardized, prospective, multicenter pediatric neurosurgical oncology data collection.
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