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J Neurol Surg B Skull Base 2024; 85(01): 001-008
DOI: 10.1055/a-1978-9380
Original Article

The RAPID Consortium: A Platform for Clinical and Translational Pituitary Tumor Research

Michael Karsy 
1   Department of Neurosurgery, The University of Utah, Salt Lake City, Utah, United States
,
Varun Kshettry 
2   Department of Neurosurgery, Cleveland Clinic, Cleveland, Ohio, United States
,
Paul Gardner
3   Department of Neurosurgery, University of Pittsburgh, Pittsburgh, Pennsylvania, United States
,
Michael Chicoine 
4   Department of Neurosurgery, Washington University in Saint Louis, Saint Louis, Missouri, United States
,
Juan C. Fernandez-Miranda
5   Department of Neurological Surgery, University of Pittsburgh, Pittsburgh, Pennsylvania, United States
,
James J. Evans
6   Department of Neurological Surgery, Thomas Jefferson University, Philadelphia, Pennsylvania, United States
,
Garni Barkhoudarian
7   Department of Neurosurgery, Pacific Neuroscience Institute, Los Angeles, California, United States
,
Douglas Hardesty
8   Department of Neurological Surgery, The Ohio State University Wexner Medical Center, Columbus, Ohio, United States
,
Won Kim
9   Department of Neurosurgery, University of California, Los Angeles (UCLA), Los Angeles, California, United States
,
Gabriel Zada
10   Department of Neurosurgery, University of Southern California, Los Angeles, California, United States
,
Tomiko Crocker
11   Barrow Clinical Outcomes Center, Barrow Neurological Institute, Phoenix, Arizona, United States
,
Ildiko Torok
11   Barrow Clinical Outcomes Center, Barrow Neurological Institute, Phoenix, Arizona, United States
,
Andrew Little
12   Department of Neurosurgery, Barrow Neurological Institute, Phoenix, Arizona, United States
› Author Affiliations Funding This study is funded by Barrow Clinical Outcomes Center, Barrow Women's Board, individual member institutions/departments, and Lodestar Foundation.
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Abstract

Objectives Pituitary tumor treatment is hampered by the relative rarity of the disease, absence of a multicenter collaborative platform, and limited translational–clinical research partnerships. Prior studies offer limited insight into the formation of a multicenter consortium.

Design The authors describe the establishment of a multicenter research initiative, Registry of Adenomas of the Pituitary and Related Disorders (RAPID), to encourage quality improvement and research, promote scholarship, and apply innovative solutions in outcomes research.

Methods The challenges encountered during the formation of other research registries were reviewed with those lessons applied to the development of RAPID.

Setting/Participants RAPID was formed by 11 academic U.S. pituitary centers.

Results A Steering Committee, bylaws, data coordination center, and leadership team have been established. Clinical modules with standardized data fields for nonfunctioning adenoma, prolactinoma, acromegaly, Cushing's disease, craniopharyngioma, and Rathke's cleft cyst were created using a Health Insurance Portability and Accountability Act-compliant cloud-based platform. Currently, RAPID has received institutional review board approval at all centers, compiled retrospective data and agreements from most centers, and begun prospective data collection at one site. Existing institutional databases are being mapped to one central repository.

Conclusion The RAPID consortium has laid the foundation for a multicenter collaboration to facilitate pituitary tumor and surgical research. We sought to share our experiences so that other groups also contemplating this approach may benefit. Future studies may include outcomes benchmarking, clinically annotated biobank tissue, multicenter outcomes studies, prospective intervention studies, translational research, and health economics studies focused on value-based care questions.

Keywords

pituitary adenoma - craniopharyngioma - Cushing's disease - Rathke's cleft cyst - registry - consortium


Publication History

Received: 10 July 2022

Accepted: 07 September 2022

Accepted Manuscript online:
15 November 2022

Article published online:
30 December 2022

© 2022. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 

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