FAQs

Post-mortem brain tissue and tissue derivatives (including DNA, RNA and CSF) are available from people who have had a wide range of conditions that cause dementia including Alzheimer’s disease, vascular dementia, Lewy body dementia and frontotemporal lobar dementia, as well as controls. Both fixed and frozen tissue is available. All cases and controls will have a standardised set of information including demographic details, past medical and drug history, together with scores for cognitive function, mood and behaviour and activities of daily living.

All Brains for Dementia Research tissue is listed on the UK Brain Banks Network database. The database also allows users to search for cases/tissue by applying a range of search criteria. You can search for cases based on disease/diagnosis/cause of death, find control cases, age range, gender, brain pH range, post-mortem delay and the type of tissue (CNS, muscle, fixed, frozen, etc.). You can also browse through all of the cases submitted to the database by an individual brain bank if they wish to access tissue from that particular bank.

Researchers can apply to access data generated from the BDR cohort. As with tissue requests, you should contact the relevant brain bank or the BDR Coordinating Centre to access the data you require. The application process will depend on what data you are wanting to access. These flow charts lay out the process for how to apply to gain access to the data.
Requesting neuropathological data only
Requesting data access only

All applications are treated as confidential; however we are required to provide summary information on applications to funders and Ethics Committees in annual reports. The scientific justification needs to include the hypothesis you are proposing to test and a succinct background and experimental section. Depending on the type, amount of specificity of the tissue or the data requested, applications may be made through the BDR Coordinating Centre or directly with individual Brain Banks. If you are not sure which Brain Bank to apply to, please contact the BDR Coordinating Centre . This flow chart lays out the tissue request process.

Once an application is received, it will be circulated electronically to the relevant Request Committee and we aim to have an answer within 28 days. For large or specialised requests more than one bank may be involved which requires separate applications to be made to each brain bank.

In line with the MRC UK Brain Bank Network and associated charities supporting brain banking, we will follow the MRC partial cost recovery scheme standard tariff for tissue provision. This was introduced in 2016 to secure a sustainable future for UK Brain Banks. If you have any queries regarding an application, please contact the relevant Brain Bank or the BDR Coordinating Centre.

You will receive a Materials Transfer Agreement (MTA) to sign. Once this is returned your tissue will be dispatched as soon as possible by courier at your expense. Delays do occur if there are any issues with the MTA. Similarly, large and complex tissue requests take longer than smaller ones and this should be taken into consideration when requesting tissue. Your local Brain Bank will be able to set out a timeline for when they will issue the tissue once they receive the signed MTA. You will be asked to acknowledge receipt of the tissue samples.

You must acknowledge BDR as the source of tissue and associated data and tell us how your research is going, either by sending details of publications and a short report or by sending a summary of research where no publication has yet occurred. Such information will be required at least annually, and should be sent to the brain bank supplying the tissue, and a copy to the BDR Coordinating Centre. You must acknowledge BDR in your publications and posters. In addition to anything you need to include in the Methods section, it is mandatory to state in the acknowledgement section that:

“human post-mortem tissue was obtained from [name of brain bank or banks], (a) member(s) of the Brains for Dementia Research Network”.

Or other wording suggested by your local brain bank.

This allows us and our funders to keep track of research that has used the BDR resource and assess the impact of their funding. We would also like to use information about projects to encourage researchers, funders and future brain donors.

If you are applying from a UK institution or organisation, in most cases you do not need to have your own ethics approval to request and use BDR tissue. The Brain Banks in the BDR Network have generic ethics committee approval to function as research tissue banks, which means that they can provide tissue samples to UK-based researchers for a broad range of studies without the need for the researchers to obtain their own ethics approval.

Requests from overseas require evidence of approval by your Institutional Review Board, and it is your responsibility to ensure that, prior to export, you are satisfied that the material or data will be handled appropriately and that the required standards of the recipient country have been met.

BDR was established to further dementia research and while the broadest possible interpretation will be applied it is unlikely that any request that does not fall within what the committee considers to be relevant will be granted. There are several specialist tissue banks in the UK who may be able to help. If you are in any doubt, please contact the BDR Coordinating Centre before submitting an application.

The hippocampus is a relatively small structure and is greatly reduced in size in people with Alzheimer’s disease. Researchers often request this area when other brain regions would be an equally valid test of their hypothesis; where this appears to be the case the Brain Bank Committees will often request that the researchers reconsider their application or provide considerable further justification for their request. If you plan to ask for hippocampal tissue, particularly frozen tissue then we ask that you take these points into account when preparing the application. If you need to discuss this further, please contact the BDR Coordinating Centre.

The cases available to researchers from BDR brain banks are increasingly from the BDR cohort where participants have a structured history (CAMDEX), serial assessments of memory (MMSE, MoCA, TICSm, CDR), mood (GDS, Cornell) and behaviour (NPI), activities of daily living (BADLS) and other relevant clinical information (such as Hachinski, Global Deterioration Scale, Medication). All cases have detailed standardised neuropathology. Summary information for both aspects will be available to researchers on request. More detailed information, for example very specific scores for assessments or regions of the brain not usually studied in standard work-up, may be available through collaboration with BDR brain banks or recruitment teams, or by contacting Richard Cain.

The MRC and associated brain banking charities have introduced a cost recovery scheme for the provision of tissue. The tariff is standardised and has been implemented across the UK Brain Banks Network. The charges for commercial users cover approximately two-thirds of the costs of retrieval, assessment and archiving of the brain tissue. Whereas, the charges for academic institutions cover approximately one-third of these costs. You can find full details of the tariff on the MRC website.

If you are intending to use human tissue in future projects, please remember to include these costs in any upcoming grant applications.

This is a very important part of the application as there are lay members of the panel who need to approve the tissue request. In structuring your lay summary it is suggested that you answer the following questions:

• What is already known about this topic?
• How is your project different from other projects in the area?
• What is your hypothesis and what do you hope to find out?
• How will this research improve the lives of people with dementia and / or their carers?

Try to avoid technical language and jargon, and keep in mind that those reading your summary may have loved ones with dementia, or have dementia themselves. Try to avoid language that is negative or could upset people, for example, refer to people as volunteers rather than subjects, and avoid using words like demented or suffer.