The national DBS brain tissue network pilot study: need for more tissue and more standardization

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ORIGINAL PAPER

The national DBS brain tissue network pilot study: need for more tissue and more standardization V. Vedam-Mai • N. Krock • M. Ullman • K. D. Foote • W. Shain • K. Smith • A. T. Yachnis • D. Steindler • B. Reynolds • S. Merritt • F. Pagan • J. Marjama-Lyons • P. Hogarth • A. S. Resnick • P. Zeilman M. S. Okun



Received: 26 January 2010 / Accepted: 11 June 2010 / Published online: 30 June 2010 Ó Springer Science+Business Media B.V. 2010

Abstract Over 70,000 DBS devices have been implanted worldwide; however, there remains a paucity of well-characterized post-mortem DBS brains available to researchers. We propose that the overall understanding of DBS can be improved through the establishment of a Deep Brain Stimulation-Brain Tissue Network (DBS-BTN), which will further our understanding of DBS and brain function. The objectives of the tissue bank are twofold: (a) to provide a complete (clinical, imaging and pathological) database for DBS brain tissue samples, and (b) to make available DBS tissue samples to researchers, which will help our understanding of disease and underlying brain circuitry. Standard operating procedures for processing DBS brains were developed as part of the pilot project.

Complete data files were created for individual patients and included demographic information, clinical information, imaging data, pathology, and DBS lead locations/settings. 19 DBS brains were collected from 11 geographically dispersed centers from across the U.S. The average age at the time of death was 69.3 years (51–92, with a standard deviation or SD of 10.13). The male:female ratio was almost 3:1. Average post-mortem interval from death to brain collection was 10.6 h (SD of 7.17). The DBS targets included: subthalamic nucleus, globus pallidus interna, and ventralis intermedius nucleus of the thalamus. In 16.7% of cases the clinical diagnosis failed to match the pathological diagnosis. We provide neuropathological findings from the cohort, and perilead responses to DBS. One of the most important observations made

V. Vedam-Mai  K. D. Foote  B. Reynolds  M. S. Okun (&) Department of Neurosurgery, University of Florida, 100 S. Newell Drive, Room L3-100, P.O Box 100236, Gainesville, FL 32610, USA e-mail: [email protected]

A. T. Yachnis Department of Pathology, University of Florida, Gainesville, FL, USA

N. Krock  M. Ullman  S. Merritt  A. S. Resnick  P. Zeilman  M. S. Okun Department of Neurology, University of Florida, Gainesville, FL, USA W. Shain  K. Smith Wadsworth Center, Albany, NY, USA

F. Pagan Georgetown University, Washington, DC, USA J. Marjama-Lyons Department of Neurology, University of New Mexico, Albuquerque, NM, USA P. Hogarth Department of Molecular and Medical Genetics, University of Oregon, Eugene, OR, USA

D. Steindler Department of Neuroscience, University of Florida, Gainesville, FL, USA

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in this pilot study was the missing data, which was approximately 25% of all available data fields. Preliminary results demonstrated the feasibility and utility of creating a