The milestone for July 2015 for the MRC funded brain banks (Edinburgh, Newcastle, Oxford and London (Neurodegenerative Diseases Bank) was a follows: ‘Initial discussions on cost recovery should have taken place; the MRC banks should be considering how they can implement these approaches’.

Update on progress

It has always been MRC’s expectation that the banks would develop a model towards self-sustainable cost recovery. In 2014/15 and 2015/16, the ‘service support costs’ agreed by MRC’s Management Board (for collection, processing and diagnosis) was at least 25% below the actual value (based on the cost of the number of brains collected the previous year). The banks started exploring a variety of costing models used for acquiring tissue and a simple model for cost recovery (Table 1) has now been agreed by the banks and stakeholder charities (ARUK, AS, Autistica, MS Society, Parkinson’s UK).

The pricing structure has been designed to be transparent and easy to implement, but will be applied flexibly to allow the brain banks discretion to waive charges when providing for tissue for pilot studies or for researchers who routinely prepare or diagnose tissue sections locally in the banks.

Not all sample types listed are available from all banks, individual banks will advise on availability.

Table 1 Proposed pricing structure for tissue requests from the UK Brain Bank Network EXCLUDING VAT.

Additional costs will be negotiated for more complex requests (e.g. particular stains or sample extraction).

Administration costs (including logging of request, database search, case retrieval, liaison with researcher and courier, booking out of samples.

Packaging typically £10 - £20 for most requests (unless collection is arranged by the requesting researcher).

Ongoing activities towards implementation:

• Legal agreements: each Bank is required to update its own local legal agreements because charging for tissue affects each bank's Terms of Reference differently.

• Developing and communicating guidance on implementation for the banks’ funders and the researchers who use the tissue, e.g. for including potential costs in grant applications.

• Developing minimum reporting and auditing requirements.

Implementation

MRC’s Neurosciences and Mental Health Board approved the costing model. Communication documentation has been drafted to update:

• The MRC website and local websites of the banks

• Registered users of the database

• The Brain Bank staff (including information for invoicing and auditing)

• Charity stakeholders (to be specified by the charities)