Frequently asked questions
How long does the BRAIN UK application process take?
BRAIN UK approvals usually take around two weeks (from receipt of the completed application form) but this is dependent on the application and whether it needs to be updated following review. Tissue retrieval can typically take 3 months, but may take longer depending on the nature of your request.
Is there a charge for applying to BRAIN UK?
BRAIN UK does not currently charge for the processing of applications to access human tissue from neuropathology archives, however, there are usually costs incurred for the retrieval, processing and transportation of tissue charged by the collaborating centre. These costs are to be met by the investigatorās grant fund.
How much do tissue samples cost?
TheĀ UK Brain Banks Network has provided pricing guidelines (which includes suggested costs for administration and transportation as well as for the samples themselves). Please note that pricing structure can differ across centres, as many neuropathology centres that take part in BRAIN UK are not part of this network, so this information should be used as a guide only.
Which neuropathology centres are involved with BRAIN UK?
There are currently more than 20 NHS Neuropathology centres participating from across the UK.
What is the format of the tissue; is there any frozen tissue available?
Most of the tissue is FFPE but it may be possible to obtain frozen too, if this is justified by the research proposal. If frozen tissue is required please make an enquiry with us before submitting an application.
Does BRAIN UK cover anything other than brain tissue?
Yes.Ā BRAIN UK includes all human tissues/materials derived from diagnostic Neuropathology practice which are mainly from the following anatomical regions: brain, spinal cord, meninges, skull, spine, associated soft tissues, peripheral nerve and muscle. Less frequently sampled structures include the eye and related structures, skin and other organs/tissues in relation to neurological disease.Ā This covers a wide range of disorders such as inflammation and degeneration (including rare neurodegenerative conditions), demyelination, psychiatric, cerebrovascular, epilepsy, genetic, trauma including head injury, tumour and control tissue.
I would like some clinical information relating to the samples I have requested, can I access this data?
This is may be possible. If corresponding data is required, the exact information needed must be included in the application form. Ā Once approved, arrangements can be made for a health professional to access the data so that it can be provided to the researcher in a link-anonymised format. Please be aware that it is likely that additional costs will be incurred from the centre for this service and/or a formal collaboration may be required.
I am a researcher working outside of the UK, can I apply?
Yes. BRAIN UK will permit the release of archived human tissue to bona fide Universities and health care institutions situated overseas. To date, we have approved applications from mainland Europe, the US and Canada.
The criteria to be applied to determine the validity and merit of such applications by the BRAIN UK Director will be the same as those for any other applicant. Overseas applicants will have to sign up to the standard terms and conditions, as part of the completion of the tissue request form, which cover storage, use, disposal and/or return of unused tissue in accordance with the Human Tissue Authority Codes of Practice. Overseas researchers will have to confirm that they satisfy the legal and ethical requirements of their own countries and BRAIN UK will need to be satisfied that these are broadly comparable to those of the UK. As custodians of their own neuropathology archives, each Participating Centre will have the ultimate veto regarding access to and use of their tissue repositories.
How do I donate my brain tissue for research?
BRAIN UK supports researchers to Ā use tissue already stored in diagnostic archives and is not involved in the process of donation. Ā If you wish to donate your whole brain after death (and any associated relevant tissues), your first point of contact should be your clinical care team.Ā In addition, your local bereavement centre or service may be able to help you with this.
If you would like further information about brain donation, the following websites provide advice/guidance about the process:
If you would like some information about the research that UK patients have supported, through BRAIN UK, please have a look at our lay summaries.
How do I acknowledge BRAIN UK?
It is suggested to acknowledge BRAIN UK and each NHS Trust that provided tissue in any publication arising from its use.