AN INTEGRATED APPROACH TO U.K. BRAIN BANKING ALLOWING RESEARCHERS TO SELECT TISSUE WITH PRECISION: MRC U.K. BRAIN BANK NETWORK, CSOLS TRACKING SYSTEM AND BRAINS FOR DEMENTIA RESEARCH

Abstract

The MRC UK Brain Bank Network (UKBBN) links 10 brain banks that operate to uniform standards and share data on over 15,000 brains. A secure network of databases has been developed to facilitate access to tissue and associated clinical information. Funded by DPUK, a CSols sample tracking system is being implemented across the UKBBN, to monitor sample availability and use. Included within the UKBBN are over 575 donations from Brains for Dementia Research (BDR), a longitudinal study funded by Alzheimer's Society and Alzheimer's Research UK, on >3200 participants who have consented to brain donation. Now 9 years after inception, it is a leading source of brain tissue and psychometric data for research. The BDR Comprehensive Assessment Database (CAD) holds clinical data for the entire BDR project. Over 2800/8500 assessments have been recorded in CAD to date; retrospective data entry is complete for 2 of the 6 lead sites. After death and brain donation, anonymised data are copied from CAD to the UKBBN database, allowing clinical and neuropathological data to be accessed across the network in one searchable database via a web browser (https://brainbanknetwork.cse.bris.ac.uk/). ICD-10 codes are used for clinical diagnoses, and a hierarchical coding system for the pathology. Complex searches can be performed on combinations of demographic, clinical and pathological data, allowing precise selection of brains for research. The CSols system provides data on tissue availability to the MRC UKBBN database and allows detailed oversight and monitoring of sample usage. Major changes to the IT infrastructure of UK brain banks are strengthening governance and benefiting research. Advances in our understanding of human neurological disease have depended on analysis of well-characterised human brain tissue curated by brain banks. Coordinated advances in the IT infrastructure of the UKBBN provide new opportunities for all researchers to benefit from this unparalleled scientific resource.