Page 45 - WNS 2022 E-Program Booklet

The RAPID consortium: a multicenter platform for clinical and translational
pituitary tumor research

Andrew S. Little, MD, MBA, Barrow Neurological Institute, Phoenix, AZ
Co-author : The RAPID Consortium

Introduction: Pituitary tumors are rare, and research occurs in silos. Establishing a
multicenter pituitary surgical research and outcomes consortium is central to improv-
ing patient care. We describe the establishment of a multicenter research initiative,
Registry of Adenomas of the Pituitary and Related Disorders (RAPID). The goals
are to serve the clinician-scientist through accelerating pituitary tumor research by
(1) developing a platform for quality improvement efforts and clinical research, (2)
promoting collegiality and scholarship, and (3) applying innovative solutions to the
challenges of outcomes research.
Methods: The organizational philosophy is based on a distributed leadership model
where each site leads a clinical module. The scientific strategy includes retrospec-
tive and prospective data collection for observational surgical outcome studies,
thereby providing the scientific rationale to compete for extramural funding for pro-
spective intervention trials. The Barrow Clinical Outcomes Center is the data coordi-
nating center. A HIPAA compliant cloud-based platform, template study protocols,
informed consent forms, and data sharing agreements were developed.
Results: The consortium was founded in 2021 by 11 academic US pituitary centers
with plans to grow to 14 centers in 2023. A Steering Committee, bylaws, and a lead-
ership team have been established. Clinical modules for nonfunctioning adenoma,
prolactinoma, acromegaly, Cushing’s disease, and Rathke’s cleft cyst are complete.
IRB approval has been obtained at seven centers to date. To facilitate automated
data capture, we have begun mapping existing individual institutional databases to
the RAPID platform which will yield an initial patient cohort of several thousand pa-
tients. A “living biobank” with clinical annotations is in the planning stages.

Conclu-sions: The RAPID consortium has laid the foundation for a multicenter
collaboration to facilitate pituitary tumor research. Future initiatives include
outcomes benchmark-ing, health economics, digital phenotyping, and establishing a
first of its kind “living biobank”. An update will be presented at the meeting.

Ralph B. Cloward – Not Only an Innovator in Spine Surgery
MOUSTAPHA ABOU-SAMRA, MD VENTURA COUNTY NEUROSURGICAL
ASSOCIATES, VENTURA, CALIFORNIA
Ralph B. Cloward’s contributions to spine surgery are well known to most of us. His
presence on the Big Island during the Pearl Harbor Attack and his care for the
many, many severely wounded are in the history books. What is not as well known,
however, are his contributions to the residents/patients of Hawaii’s Kalaupapa Leper
Colony on the Island of Molokai, during his illustrious career. Also not known are his
treatment of Hyperhidrosis and the fact that he performed many prefrontal leukoto-
mies. A review of Cloward’s contributions to Neurosurgery, his involvement during
Pearl Harbor, his contributions to his community in Hawaii, and particularly to the
care of lepers in Molokai, and his extensive surgical armamentarium will be dis-
cussed.

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