BRain Archive Information Network (BRAIN UK)

The retention of brains and brain tissue samples following post mortem examinations came to have a very high public profile about 5 years ago, and this resulted in a considerable amount of adverse publicity. Now, however, the process has been scrutinised and a new law has been passed in the form of the Human Tissue Act. This opens the way to the legal and ethical use of retained brain tissue samples for research purposes for the potential benefit of all. It is to be hoped that BRAIN UK will be seen as a positive outcome of the close public scrutiny of the retention and use of human tissues.

A recent MRC workshop re-iterated the continuing need for study of human brain tissue to further understand neurological disease. This proposal, submitted on behalf of the British Neuropathological Society, is to establish a national database of human brain and other relevant tissue which has been collected and archived following diagnosis over a period of 30-40 years, according to guidelines of the Royal College of Pathologists. Tissue archived before October 2006, referred to as ?existing holdings?, is now available for research according to the Human Tissue Act 2004, provided cases are anonymised and ethical approval is obtained. To date there has been no nationwide systematic documentation or exploitation of this resource. A pilot survey of 5 regional neuropathology services has revealed 28,000 cases being potentially available, which extrapolates to approximately 150,000 cases in the UK. The collections comprise predominantly paraffin wax-embedded tissue which is ideal for study of disease phenotypes in terms of morphology and specific proteins. In many cases nucleic acids can also be studied: genomic DNA to study the influence of genetic variation on disease risk and phenotype; mitochondrial DNA; and the genetics of micro-organisms. A major benefit of these collections is that they cover neurological disorders comprehensively, contain large numbers of common disorders, useful numbers of rare disorders and non-disease controls. As such this resource is complementary to existing disease-specific formal brain banks. The collections represent decades of work and it would take a long time to collect such tissue prospectively, and indeed it may be entirely impracticable due to recent changes in autopsy practice.

This proposal is to perform an audit to document the tissue available and to set up a web-based access system containing a database of disease categories, numbers of cases available, location of tissue and contact details. We have confirmation of support from almost all neuropathology services in the UK. This is an economical way of unlocking the potential in this resource which is of global significance.