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DOI: 10.1055/a-2646-2339
Early Findings from the Multicenter RAPID Consortium on Papillary Craniopharyngiomas
Funding Information The authors acknowledge the Lodestar Foundation and Barrow Neurological Foundation for financial support.

Abstract
Background
Craniopharyngiomas are rare parasellar tumors, and papillary craniopharyngiomas (PCPs) represent 8 to 20% of cases.
Design
Interim analysis of retrospective data collected from the Registry of Adenomas of the Pituitary and Related Disorders (RAPID).
Setting
Fourteen U.S.-based academic skull base centers between 2011 and 2023.
Participants
Patients with PCPs.
Main Outcome Measures
Demographic, imaging, surgical, and outcome variables.
Results
Ninety-nine patients with PCPs were included. The mean age was 51.8 ± 14.7, and 57.6% were male. Most tumors showed mixed cystic/solid components (67.5%), were transinfundibular (50.0%), and were treated with an endoscopic endonasal approach (74.5%), with 51.1% demonstrating gross total resection (GTR). Pituitary stalk was preserved in 51.9%. Permanent arginine vasopressin deficiency was seen in 67.1% and was associated with pituitary stalk sacrifice (p = 0.003). Cerebrospinal fluid leak was the most common nonendocrine postsurgical, 30-day complication (9.1%), reason for return to the operating room (3.1%), and reason for 90-day readmission (8.1%). Most patients (63.9%) received no adjuvant therapy; GTR was associated with decreased radiotherapy use (p = 0.0001). BRAFV600E mutation was detected in 64/69 tumors tested, although only one patient was treated with a BRAF inhibitor. A mean follow-up of 12.3 ± 14.6 months was seen for the group.
Conclusions
RAPID consortium enabled the largest real-world clinical information dataset for PCPs. Early findings support that GTR and stalk preservation are important to outcomes. Iterative analysis and discussion of data led to the generation of a framework for future studies to fully leverage the capabilities of multicenter registries.
Keywords
papillary craniopharyngioma - multicenter - surgery - registry - outcomes - RAPID - extent of resection - stalk preservation - endocrinology outcomesPublikationsverlauf
Eingereicht: 25. Februar 2025
Angenommen: 29. Juni 2025
Artikel online veröffentlicht:
18. Juli 2025
© 2025. Thieme. All rights reserved.
Georg Thieme Verlag KG
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