Newcastle Brain Tissue Resource - Frequently Asked Questions

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.

Brain tissue research depends upon your generosity. Thank you for considering this information.