The Donation Process
The NBTR is a partnership between the Medical Research Council, local NHS trusts and Newcastle University. It has contributed to important medical advances such as new treatments for Alzheimer's disease and the identification of a common type of dementia in older people called Dementia with Lewy Bodies.
The donation of brain tissue to research is an invaluable source of help. Studies using human brain tissue are essential in increasing our understanding of brain ageing and related diseases and are the best way for us to search for more effective diagnoses and treatments.
Even though progress in research towards finding causes of and treatments for a wide variety of diseases and disorders is a concern for all of us, few people realise that in many cases it cannot be achieved without human tissue.
Research projects are currently running with the help of volunteers diagnosed with diseases such as Alzheimer's disease, Parkinson's disease, Lewy Body dementia and Stroke. Studying tissue donated by sufferers of these diseases helps us to discover what brain changes take place during the course of the disease and increases our overall understanding.
Who can donate tissue?
Each individual brain tissue donation is very important to us. At present we are only able to accept donations of affected tissue from people who are part of the University's study programmes and are extremely grateful to those patients and families who continue to facilitate our research in this way.
Brain tissue from donors without memory impairment is also a very important gift. Research progress already made would not have been possible without healthy tissue which is used to establish the brain changes which occur in normal ageing rather than as a result of disease. We would like to encourage people without neurological difficulties to consider donating brain tissue at the time of their death and have a register to which prospective normal donors aged 65 years and over may wish to add their name.
For more information please contact our nurse liaison team who will be happy to provide you with more information:
- Email: firstname.lastname@example.org or telephone our research nurses:
- Debbie Lett on 0191 208 1231
- Susan Richardson on 0191 208 1229
For The Public
Brain tissue research depends upon your generosity. Below are answers to some frequently asked questions about the donation process. Thank you for considering this information.
How is tissue collection and storage by the NBTR regulated?
Since April 2006, like all other brain banks in the UK, we have operated within the regulatory framework of the Human Tissue Authority. View our information on the legal and ethical framework.
Why is brain donation important for understanding brain diseases in the elderly?
Brain ageing and dementia research is a high priority as debilitating diseases such as Alzheimer's and Parkinson's become increasingly common. Careful examination of brain tissue is the best possible way to increase our understanding and help fight these diseases. We need to look at both affected and healthy tissue so that comparisons can be made and we can see which changes are due to disease and which are related to normal ageing.
Who arranges the donation?
Brain tissue donation is arranged in a straightforward and sensitive manner by a dedicated team of research nurses within the Institute for Ageing and Health. A family can only make the decision to donate the brain tissue of a loved one after careful consideration and there is no pressure to agree to donation. It is usually better to make plans for tissue donation well in advance to allow family members time to discuss the matter. Although it is your decision to make, we usually consult the next of kin at the time of donation. If you have no living relatives or prefer to involve someone other than your family, you can nominate a representative to make a decision on your behalf.
What do we mean by the term brain tissue?
We mean the whole brain. As the brain is a very complex structure it is best to look at all the different parts of the brain.
Who performs the brain autopsy?
Tissue is recovered at the Royal Victoria Infirmary by a specialist doctor (a neuropathologist). Donation takes place according to a strict protocol and donors and their families are always treated with respect and compassion. Ideally the donation should take place within 24 hours but can take place up to 72 hours after death. There is no apparent disfigurement.
What will happen to my tissue?
Once the brain has been removed and thoroughly examined, it is divided into small sections which are frozen or preserved in a fixative. These samples are kept securely within the brain bank for a period of 10 years or longer so that the tissue can be put to the best possible use. When research on the tissue is complete, any remaining is disposed of respectfully and legally.
After the donation is made, what happens if my family decide that they do not wish tissue to be used any more?
Families can withdraw their consent for use at any time without having to give a reason. They simply contact the brain tissue resource and a nurse will discuss disposal options with them.
Will my privacy be respected?
NBTR protect the confidentiality of donors and their families to the fullest extent. Each donor is given a unique code number so that the tissue cannot be matched to personal details. The best use of tissue samples often depends upon related clinical and personal information which is collected with the permission of the family at the time of donation. These personal details are then protected securely on a computer database or in locked files and can only be accessed if necessary by the brain bank manager.
Will brain donation interfere with my funeral arrangements?
The autopsy will take place in the hospital and great care is taken to ensure that there is no delay. The health professionals overseeing the donation process will coordinate fully with your chosen funeral director.
Is brain donation acceptable to my religious faith?
Since the value of donation is recognized by most religions, traditional funeral services may be planned, but it is recommended that you consult with your religious leader or advisor if you have any concerns.
Will it cost me anything?
NBTR cover all of the expenses associated with the donation of tissue so that families incur only the usual costs.
What information will I receive?
Donations are generally made as a valuable contribution to ongoing research but we are pleased to give information based on the neuropathology report once it becomes available. Updates on progress in research can be found in our newsletter - please contact the brain bank manager for a copy. Information on current research projects can also be found on this website.
The NBTR invites applications from researchers within Newcastle University and those from external organisations.
All applications must demonstrate that the proposed work is scientifically and ethically valid. Tissue samples are always supplied in a form that is anonymous to the researcher, protecting the identity and personal information of the donor.
Scientists who wish to have access to the collection can apply for a logon to browse the database of available tissue. To become an authorised user and have access to the search and application pages on the above site, or alternatively to make an application in the conventional manner, please contact the NBTR Manager, Debbie.email@example.com
Further information and application forms can be accessed at https://nbtr.ncl.ac.uk.
Ethics and Regulation
This section explains how tissue collection and storage at the NBTR is regulated.
All of our work is approved by the relevant Research Ethics Committees and we operate strictly within the guidelines issued by the Medical Research Council and the Department of Health. From September 2006, like all other brain banks in the UK, we have operated within the new regulatory framework of the Human Tissue Authority.
Information on how UK research ethics committees are managed in the NHS is on the website of the National Research Ethics Service
The Human Tissue Authority (HTA) was created following the passing into law of 'The Human Tissue Act 2004'. Part of the remit of the HTA is the supervision of tissue banks such as the NBTR. All those collecting tissue for research, including brain banks such as the NBTR, need a licence from the HTA.
The Medical Research Council supports a number of other brain banks in the UK - details can be found on the MRC webpages.
If you have queries about the donation process, you can contact our nurse liaison team by email at firstname.lastname@example.org or telephone either Debbie Lett (NBTR Manager) on 0191 208 1231 or Susan Richardson on 0191 208 1229
Our postal address is:
Newcastle Brain Tissue Resource
Campus for Ageing and Vitality
Newcastle upon Tyne
Organisations offering information and support
• Full list of Alzheimer's Society Information Sheets
• Full list of Parkinson's Disease Society Information and Support