Early Findings from the Multicenter RAPID Consortium on Papillary Craniopharyngiomas

Abstract Craniopharyngiomas are rare parasellar tumors, and papillary craniopharyngiomas (PCPs) represent 8 to 20% of cases. Interim analysis of retrospective data collected from the Registry of Adenomas of the Pituitary and Related Disorders (RAPID). Fourteen U.S.-based academic skull base centers between 2011 and 2023. Patients with PCPs. Demographic, imaging, surgical, and outcome variables. 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. 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.

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Publication Details

Journal
Journal of Neurological Surgery Part B Skull Base
Published
2025-07-18
DOI
https://doi.org/10.1055/a-2646-2339
Primary Topic
Pituitary Gland Disorders and Treatments
Type
article
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article

Early Findings from the Multicenter RAPID Consortium on Papillary Craniopharyngiomas

Michael J. Karsy, William T. Couldwell, Carolina Benjamin, Varun R. Kshettry et al.
Journal of Neurological Surgery Part B Skull Base
Pituitary Gland Disorders and Treatments
article

Early Findings from the Multicenter RAPID Consortium on Papillary Craniopharyngiomas

Michael J. Karsy, William T. Couldwell, Carolina Benjamin, Varun R. Kshettry, Michael P. Catalino, Donato R. Pacione, Mark A. Pacult, Andrew S. Little, Jamie J. Van Gompel, Sandhya Rupa Palit, Michael R. Chicoine, Stephanie Kim Cheok, Adam N. Mamelak, Garni Barkhoudarian, Daniel M. Prevedello, Julie Martha Silverstein, Kyle C. Wu, D. T. Pham, Nathan Thomas Zwagerman, Albert Kim, Gabriel Zada, Won Bae Kim, Paul A. Gardner, Robert Charles Rennert, James J. Evans, Juan Carlos Fernández Miranda, Carter M. Suryadevara, Calen Callopy
article en

Abstract

Abstract Craniopharyngiomas are rare parasellar tumors, and papillary craniopharyngiomas (PCPs) represent 8 to 20% of cases. Interim analysis of retrospective data collected from the Registry of Adenomas of the Pituitary and Related Disorders (RAPID). Fourteen U.S.-based academic skull base centers between 2011 and 2023. Patients with PCPs. Demographic, imaging, surgical, and outcome variables. 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. 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.

Journal of Neurological Surgery Part B Skull Base
University of Southern California (US), Cedars-Sinai Medical Center (US), Cleveland Clinic (US), Barrow Neurological Institute (US), St. Joseph's Hospital and Medical Center (US), Mayo Clinic (US), University of Miami (US), Thomas Jefferson University (US), University of California, Los Angeles (US), Medical College of Wisconsin (US), Washington University in St. Louis (US), University of Utah (US), University of Michigan (US), NYU Langone Health (US), UPMC Health System (US), Michigan United (US), Pacific Heart Institute (US), University of Pittsburgh Medical Center (US), University of Virginia (US), The Ohio State University (US), University of Missouri (US), Stanford University (US)
Openalex Percentile: Top 73%
Pituitary Gland Disorders and Treatments
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