Early Findings from the Multicenter RAPID Consortium on Papillary Craniopharyngiomas

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). BRAF^V600E 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 outcomes

Publikationsverlauf

Eingereicht: 25. Februar 2025

Angenommen: 29. Juni 2025

Artikel online veröffentlicht:
18. Juli 2025

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