Oxford University Hospitals NHS Foundation Trust

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Tissue donation explained

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This article explains the enormous value of post-mortem tissue donation to MND research.

What is post-mortem tissue donation?

This refers to the donation, after someone's death, of their brain and/or spinal cord for research. Many patients and their doctors understandably find this subject difficult to talk about. We want to see a world free of MND, and to ensure meanwhile that those living with the illness have active and fulfilling lives for as long as possible. We don't wish to dwell on the negative aspects of the illness. There is never a 'good time' to talk about dying, but we believe that it is often helpful to do this, and understanding a person's particular wishes before their death (a so-called Advance Directive) is a very important part of care.

Donation of tissue after death is something that many MND patients want to do, but are not necessarily aware that it is possible or what the enormous benefits are to research. For those who want to do this, having arrangements in place early on helps to ensure their final wishes are carried out. Oxford is privileged to have a large repository for donated tissue - the Oxford Brain Bank - which is already making an enormous contribution to solving several diseases, including MS and autism.

This BBC video from 2011 is from an exhibition showing elderly patients who donated their brain for medical research into dementia. It explains the enormous value of such donations.

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Why is the brain and spinal cord useful for MND research?

Many of the most important facts we now know about MND have come from the study of donated brains and spinal cords of patients after their death. Put simply, this knowledge has underpinned all of the recent advances in the understanding of MND, and will help the development of future treatments. Examples of facts that have come from post-mortem tissue analysis include:

  • the two main compartments of motor neuron loss i.e. upper and lower motor neurons, and how they relate to what is seen in the patient during life
  • the key molecules (e.g. TDP-43) found in the degenerated motor neurons of all cases of MND despite the great variability in the disease between patients during life
  • the wider involvement of other brain structures beyond motor neurons (even though dementia is very rare in MND).

We are currently looking for biomarkers in MND. These are substances or changes on a scan that identify disease processes in MND patients. It can be critical (and always useful) to compare what we find in the living patient with changes after death. In the case of MRI brain scanning, we can perform very much longer scans on post-mortem tissue, and use the results to develop improved scans for other patients.

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What is involved exactly if I agree?

We treat this gift with enormous respect, and it is important to be reassured that removal of the brain and spinal cord is done sensitively.

  • It will not alter the external appearance of a person.
  • It will not delay funeral arrangements.

Do I need to let anyone else know?

It is useful to explain your wishes to your family in advance, particularly to reassure them about the lack of alteration in your external appearance during the process, and the lack of delay to funeral arrangements. It is usually necessary to gain additional consent from next-of-kin for post-mortem tissue donation, even if you have filled in the patient forms.

What if I change my mind later?

This is absolutely fine - the signed document is not designed to be a legally-binding contract in any way - simply to provide evidence of your informed consent. You can change your mind at any time without any concern about your future medical care, and you would just let one of our team know.

Where do I get the forms from?

If you wish to donate your brain and/or your spinal cord then you can download the pdf forms from this site:

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Finally...

A 'loving legacy' is a way of leaving important messages to your children and family after your death. A computer App was developed following a research project involving adults who had lost a parent when they were children, and were asked what they would have liked to have known about their parent.

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