Participant Information

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Participant Information

Why is brain donation for research needed?
The brain is the most complex organ in the body. Though it is possible to study a living brain using ever-sophisticated imaging techniques, many diseases remain poorly understood and much of our research in brain disease still requires laboratory studies of donated human brain tissue.

Unlike many other organs in the body where routine operations regularly provide surplus tissue for research, surgery on patients with brain disease typically produces only very small amounts of tissue, with much of this needed to make a diagnosis. As a result, post-mortem donation of brain tissue remains very important to support research in diseases of the brain.

We have become increasingly aware that for many patients surviving traumatic brain injury, such as might occur in a car crash or as a result of a fall or in former athletes from a range of contact sports, this can alter lifelong risk of a variety of illnesses, including risk of dementia.

Access to post-mortem human brain tissue has been crucial in helping researchers recognise the link between a brain injury and degenerative brain disease. However, we are still some way from understanding why this happens, and how we might develop treatments for patients with brain injury to prevent this happening

For this reason, we are asking people to register their wishes to donate their brain at post-mortem. We are particularly looking for people who have suffered a traumatic brain injury, such as in a car crash or assault, or who have been exposed to head injuries and head impacts participating in sport, such as rugby or football.

We are also looking for people to register their wishes to donate their brain at post-mortem even if they have no known history of brain injury as this can be very helpful to our understanding of normal ageing and how brain injury might influence these processes.

The use of post-mortem tissue for medical research & education
Firstly, thank you for taking the time to read this information and for considering donation of tissue for research and medical education.

This information will help you to decide if this is something you want to do. Please think about this and read the information carefully.

Registering for post-mortem examination allows for some of your tissues and body fluids to be donated for medical research and education in the event of your death.

What is tissue?
The human body is made up of many cells that are grouped together into tissues. Some tissues form organs such as the lungs, the liver or the appendix. Other tissues are present throughout the body, for example, the bone and skin. Body fluids such as blood, urine and saliva also contain cells.

Why is human tissue required for research and education?
As well as providing care and treatment, the NHS is responsible for making sure that medical students, nurses and other healthcare professionals get the training they need. Doctors and scientists also need human tissue for medical research. If samples are collected at different stages of a particular disease it helps to understand how a particular disease or problem starts and develops. They can also try out different drugs and tests on the tissue. They may find new medicines and treatments. They may also find ways of diagnosing a disease earlier.

What is the Glasgow Bio-Repository?
The Glasgow Bio-repository provides doctors and researchers with access to human tissue so that it can be used to study different disorders.  It is an approved human tissue bank (Health Improvement Scotland) which collects, stores and provides tissue samples in an ethical and fitting manner.

What happens to my tissue after post-mortem examination?
The pathologist would normally take small samples of tissue during the post-mortem examination to look at under a microscope to assist them in making the diagnosis. After the post-mortem report is produced, these small samples of tissue are then kept as part of your medical record. We would like you to donate some of this tissue for medical research and education. We would also like you to donate any leftover tissue from biopsies and surgical operations you may have had in the past.

In addition we would like to collect other tissue samples specifically for future research and educational purposes. We will follow your specific wishes regarding the type of tissue you wish to donate.

Is normal tissue needed?
Yes.

Having normal and abnormal tissue allows researchers and clinicians to see what has gone wrong. A donation from an individual without your illness (so-called ‘control’) is equally valuable for research, because every research project requires control tissue for comparative purposes. We therefore gratefully welcome such donations and encourage unaffected spouses and family members to consider registering as donors of control tissue

What is a post-mortem examination?
A post-mortem examination happens after someone has died. It may establish the cause of death and allows for donated tissue to be recovered. It is an orderly process supervised by a consultant pathologist. It should be carried out within 24 hours after death but may be delayed for up to 72 hours.

Will a post-mortem delay the funeral?
As the post-mortem is usually carried out as soon as possible after death, ideally within 24-72 hours, funeral arrangements should not be delayed.

If the Coroner or Procurator Fiscal has asked for a post-mortem examination, tissue donation is still possible. We would contact the Coroner or Procurator Fiscal for their permission to perform the examination and collect tissue for research and education.

Will the body be disfigured?
No.

After the post-mortem examination open casket or other traditional funeral arrangements can still be made.

Will information obtained from a post-mortem be of benefit to the family?
Occasionally post mortem diagnoses are different to those made whilst the patient was alive. Sometimes a diagnosis can only be made after a post-mortem examination. This is particularly relevant when the disease may have a hereditary or familial association. If you or a close relative has such a disease, the results may then be relevant for a child or grandchild who may be at risk of developing the disorder.

What happens to the tissue?
The tissue is processed in several ways. This allows maximum information to be obtained and to ensure it is of use for many years to come. This includes freezing some of the tissue or processing it in chemicals to allow it to be viewed using a microscope.

Does donation cost anything?
No.

All costs relating to the donation will be met by the research team, including any transportation costs in bringing your body to the mortuary.

Can I register for post-mortem examination if I live outside of Glasgow?
Yes.

The Bio-Repository works with hospitals outwith the region who can assist in performing the examination so that tissue can be recovered and transferred wherever possible.

Do I have to do this?
No.

It is up to you to decide if you want to register for post-mortem examination and donate tissue for research and education. Your decision will not affect your treatment, care or diagnosis.

If you decide to take part, you can change your mind at any time. You don’t need to give a reason.

Where will researchers or clinical teachers use my stored tissue?

  • In the NHS
  • At universities
  • At research institutions
  • At biotechnology companies (pharmaceutical companies)
  • Tissue may also be used in research studies outside of the UK

Before using your tissue, all of the above must prove that they are following legal and ethical guidelines for their research. All research studies will be approved and monitored by an independent regulatory body.

How long will tissue be stored?
The tissue you donate will remain in the NHS until it is all used or your next of kin withdraws authorisation.

Will my medical notes be used?
Yes.

Researchers need to know the medical history of the person who donated the tissue. The NHS needs your permission to take this information from your medical notes. All information that is collected will be kept strictly confidential. Any information that is given to researchers will have your name and any other personal information removed so that you cannot be recognised from it.

Will the researchers carry out genetic tests on my tissue?
It may be appropriate for genetic tests to be carried out. A lot of research today focuses on the study of genetic material from normal individuals and those with known diseases. This comparison helps to reveal genetic differences, which can then be used to develop future drugs and therapies. The results of these tests cannot be traced back to you. Researchers will only use these test results for research and education.

Will anyone make money from my tissues?
It is illegal to sell tissue for profit.

The NHS may charge researchers a fee for your tissue, but this is to cover the costs of collection, preservation and storage of your tissue. The NHS uses a considerable amount of staff knowledge and skills (“know-how”) to explain what is wrong with you. This “know-how” is valuable information for researchers. The NHS will use money it gets from researchers and your tissue to improve care to its patients. If researchers develop a new drug, treatment or test, a pharmaceutical company or other researcher may then make a profit. However, any new drug, treatment or test may help everyone in the future.

What happens after I register?
This information will be recorded by the Glasgow Bio-Repository in our secure database. In the event of your death, your next of kin should contact the Bio-Repository through the switchboard of the Queen Elizabeth University Hospital Hospital (0141 201 1100) who can connect to Bio-Repository staff 24h a day. This should be done as soon as possible.

Your next of kin will then be asked formally to authorise the examination. When this is confirmed, the bio-repository will then make arrangements for the examination to proceed.

I’m still not sure if I want to take part.
If you need more information to help you decide, talk to your doctor or nurse, or contact NHS Greater Glasgow & Clyde Bio-Repository nursing staff on 0141 354 9493.

I want to register … what do I do next?
You will be asked to complete a form to register your wish to undergo a post mortem examination at the time of your death. This allows for tissue samples and your clinical data to be collected and stored for future medical research.

PLEASE NOTE THAT THE STANDARD AUTHORISATION FORM FOR POST-MORTEM EXAMINATION WILL STILL NEED TO BE COMPLETED AND SIGNED AT THE TIME OF YOUR DEATH BY YOUR NEXT OF KIN, IF THE POST-MORTEM EXAMINATION IS TO TAKE PLACE.

I do not want to register for post-mortem examination. 
If you do not want to register for post-mortem examination, then when we ask you if you wish to register for post-mortem examination, you can say no. We will record this electronically.

Your decision will not affect your current or future treatment, care or diagnosis. You can also change your mind at any time. If you do change your mind, contact 0141 354 9493. You do not need to give a reason.

Further Information
If you have any other questions or would like to register then please contact us on: 0141 354 9448; email josie.fullerton@glasgow.ac.uk

If you would like this document in Braille or audiotape format, please contact: 0141 354 9493

If you would like this document in another language, please contact: 0141 354 9493

Thank you for taking the time to read this information.