Multicenter Registry of Adenomas of the Pituitary and Related Disorders: Initial Description of Cushing Disease Cohort, Surgical Outcomes, and Surgeon Characteristics

Andrew S Little; Michael Karsy; James J Evans; Won Kim; Donato R Pacione; Albert H Kim; Paul A Gardner; Benjamin K Hendricks; Christina E Sarris; Ildiko E Torok; Trevor M Low; Tomiko A Crocker; Benita Valappil; Mridu Kanga; Hussein Abdallah; Sarah Collopy; Juan C Fernandez-Miranda; Vera Vigo; Vladimir A Ljubimov; Gabriel Zada; Norman E Garrett 3rd; William Delery; Kevin C J Yuen; Robert C Rennert; William T Couldwell; Julie M Silverstein; Varun R Kshettry; Michael R Chicoine; RAPID Consortium

doi:10.1227/neu.0000000000002888

Multicenter Registry of Adenomas of the Pituitary and Related Disorders: Initial Description of Cushing Disease Cohort, Surgical Outcomes, and Surgeon Characteristics

Neurosurgery. 2024 Mar 5. doi: 10.1227/neu.0000000000002888. Online ahead of print.

Authors

Andrew S Little¹, Michael Karsy², James J Evans³, Won Kim⁴, Donato R Pacione⁵, Albert H Kim⁶, Paul A Gardner⁷, Benjamin K Hendricks¹, Christina E Sarris¹, Ildiko E Torok¹, Trevor M Low¹, Tomiko A Crocker¹, Benita Valappil⁷, Mridu Kanga⁶, Hussein Abdallah⁷, Sarah Collopy³, Juan C Fernandez-Miranda⁸, Vera Vigo⁸, Vladimir A Ljubimov⁸, Gabriel Zada⁹, Norman E Garrett 3rd⁹, William Delery⁴, Kevin C J Yuen¹, Robert C Rennert¹⁰, William T Couldwell¹⁰, Julie M Silverstein¹¹, Varun R Kshettry¹², Michael R Chicoine¹³; RAPID Consortium

Affiliations

¹ Department of Neurosurgery, Barrow Neurological Institute, St. Joseph's Hospital and Medical Center, Phoenix, Arizona, USA.
² Department of Neurosurgery, Drexel University College of Medicine, Drexel University, Philadelphia, Pennsylvania, USA.
³ Department of Neurosurgery, Jefferson University, Philadelphia, Pennsylvania, USA.
⁴ Department of Neurosurgery, University of California, Los Angeles, Los Angeles, California, USA.
⁵ Department of Neurosurgery, New York University, New York, New York, USA.
⁶ Department of Neurosurgery, Washington University School of Medicine, St Louis, Missouri, USA.
⁷ Department of Neurosurgery, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania, USA.
⁸ Department of Neurosurgery, Stanford University, Palo Alto, California, USA.
⁹ Department of Neurosurgery, University of Southern California, Los Angeles, California, USA.
¹⁰ Department of Neurosurgery, University of Utah, Salt Lake City, Utah, USA.
¹¹ Division of Endocrinology, Metabolism and Lipid Research, Washington University School of Medicine, St Louis, Missouri, USA.
¹² Department of Neurosurgery, Cleveland Clinic Foundation, Cleveland, Ohio, USA.
¹³ Department of Neurosurgery, University of Missouri, Columbia, Missouri, USA.

PMID: 38441527
DOI: 10.1227/neu.0000000000002888

Abstract

Background and objectives: To address the lack of a multicenter pituitary surgery research consortium in the United States, we established the Registry of Adenomas of the Pituitary and Related Disorders (RAPID). The goals of RAPID are to examine surgical outcomes, improve patient care, disseminate best practices, and facilitate multicenter surgery research at scale. Our initial focus is Cushing disease (CD). This study aims to describe the current RAPID patient cohort, explore surgical outcomes, and lay the foundation for future studies addressing the limitations of previous studies.

Methods: Prospectively and retrospectively obtained data from participating sites were aggregated using a cloud-based registry and analyzed retrospectively. Standard preoperative variables and outcome measures included length of stay, unplanned readmission, and remission.

Results: By July 2023, 528 patients with CD had been treated by 26 neurosurgeons with varying levels of experience at 9 academic pituitary centers. No surgeon treated more than 81 of 528 (15.3%) patients. The mean ± SD patient age was 43.8 ± 13.9 years, and most patients were female (82.2%, 433/527). The mean tumor diameter was 0.8 ± 2.7 cm. Most patients (76.6%, 354/462) had no prior treatment. The most common pathology was corticotroph tumor (76.8%, 381/496). The mean length of stay was 3.8 ± 2.5 days. The most common discharge destination was home (97.2%, 513/528). Two patients (0.4%, 2/528) died perioperatively. A total of 57 patients (11.0%, 57/519) required an unplanned hospital readmission within 90 days of surgery. The median actuarial disease-free survival after index surgery was 8.5 years.

Conclusion: This study examined an evolving multicenter collaboration on patient outcomes after surgery for CD. Our results provide novel insights on surgical outcomes not possible in prior single-center studies or with national administrative data sets. This collaboration will power future studies to better advance the standard of care for patients with CD.

Grants and funding

Barrow Neurological Foundation