Brains for Dementia Research tissue request – notes for guidance
Thank you for your interest in applying for tissue and/or data from Brains for Dementia Research. The following information aims to guide you through the tissue/data request process and answer the most common questions. Our aim is to provide the best available human post-mortem tissue with associated serial clinical information to support the best science, enabling researchers to find new treatments and a cure for dementia. BDR has recently adopted the cost recovery model proposed by the MRC UK Brain Bank Network. An indication of likely cost can be provided on initial enquiry to BDR.
What tissue is available?
Post-mortem tissue is 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.
How do I request tissue?
All applications for tissue 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. Once we receive your application we will circulate it electronically to our Tissue Request Committee and aim to have an answer within one week. The committee consists of BDR Brain Bank Directors, independent scientists and lay members and is chaired by the BDR Director. Once approval is given the banks decide which of them will fulfil each request. For large or specialised requests more than one bank may be involved.
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. Tissue provision for pilot or preliminary studies will continue on a carriage only basis, as previously. Please ask for help and advice when factoring costs into grant applications.
What happens once my application is approved?
You will receive a Materials Transfer Agreement to sign. If you are from the UK this will be based on the Brunswick Template Agreement for Clinical samples. 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 borne in mind. However, our target is to send the tissue to you within two weeks of the completion of paperwork. You will be asked to acknowledge receipt of the tissue samples.
How do I acknowledge BDR?
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. 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 have a section in the acknowledgement section stating that “human post-mortem tissue was obtained from [name of brain bank or banks], (a) member(s) of the Brains for Dementia Research Network”. 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.
Do I need Research Ethics approval to use human tissue?
Yes, however, in general if you are applying from a UK institution or organisation you do not need to have your own ethics approval to request and use BDR tissue. BDR has devolved ethics approval in that if a tissue request is approved by the BDR tissue request committee you will be using our ethics approval number. Requests from overseas require evidence of approval by your Institutional Review Board.
Can I still request tissue from BDR if my project is not related to dementia research?
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 is to speak to Prof Paul Francis (firstname.lastname@example.org or 0207 848 6269) before submitting an application.
Is hippocampal tissue available?
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 committee 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.
What clinical and neuropathological data is available for BDR cases?
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), 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.
Why do I need to prepare a lay summary?
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?