Royal College of Surgeons in Ireland Coláiste Ríoga na Máinleá in Éirinn

Dublin Brain Bank Tissue Donation

Why is Brain Donation Important?

Diseases affecting the brain are becoming increasingly common in today's society. As such there is a pressing need for medical research in this area to try and understand how these diseases come about and how they might be treated.

Unfortunately it is impossible to study the living brain without doing any damage and neuro-imaging techniques are not well enough advanced to provide a reliable, non-invasive way of looking at the cells in action. The best way of understanding how the cells in the brain are working (or not working) is to look at the brain tissue after death. This type of study requires brain tissue donors.

The National Donor Programme encourages people throughout the country to donate their brains to medical science after death. Donations facilitate research studies that can provide valuable information on the diagnosis and treatment of many common diseases such as Alzheimer's disease, Parkinson's disease etc. which may lead to increased quality of life for patients.
All information on tissue donations remains strictly confidential.

Please click here for Intention to Donate form

FAQs

What is involved in becoming a donor?

Becoming a donor requires consent from the individual. This gives permission for brain tissue to be recovered after death and preserved for further research. Consent can be withdrawn at any time.

What happens when I die?

A post-mortem examination is carried out by the consultant neuropathologist within 24-72hrs after death. The brain tissue is recovered and stored appropriately for further use. The body is returned to the undertaker on the day of autopsy so that funeral arrangements etc. can proceed.

Are there any age requirements?

All individuals registering for donation must be over 18 years of age.

Next of kin (making them aware)

It is important to inform loved ones of your decision in order to allow time for discussion etc.

The decision to donate (taking time to consider donation, withdrawal of consent form)

The decision to donate should be considered carefully and time should be taken to consider all issues involved. Donation consent can be withdrawn at any time without personal consequences and without having to give a reason.

About Donating Brain Tissue to Research

What is meant by brain tissue?

The whole brain is examined. The brain is a very complex structure and therefore it is necessary to look at all the different parts. Some neurological conditions also involve the spinal cord. In these cases both the spinal cord and brain are recovered for examination.

Is tissue from normal brains needed?

Yes. Normal brain tissue allows comparison with the abnormal tissue, which allows researchers and clinicians to see what has gone wrong. A donation from an individual without a neurological or psychiatric 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 research is performed on the brain tissue and why is it important to have human tissue?

Many conditions such as Alzheimer's disease, bi-polar disorder, motor neuron disease, Huntington's disease, schizophrenia, autism and other neurological and psychiatric conditions only affect humans. Brains from people affected are essential for research devoted to finding treatments and cures.

Further information on research activities and groups carrying out research using donated tissue can be found on the Brain Bank website www.braindonor.ie

How will information obtained from a brain examination benefit the family?

Occasionally post mortem diagnoses are different to those made whilst the donor was alive and could have only been made after a post mortem examination of the donor's brain. This is particularly important for those in whom the neurological disease may have a hereditary or familial association. If you or a close relative have such a disease, this programme may then be relevant for a child or grandchild who may be at risk of developing the disorder.

Can I become a donor if I live outside Dublin?

Yes. The Dublin Brain Bank is in collaboration with a number of hospitals around the country to ensure that donations can be transferred from regional areas within the requisite time of 24-72hrs.

I have an infectious disease can I still donate my brain?
This depends on the disease in question please contact brainbank@rcsi.ie for further information.

Does it cost anything to donate my brain?

No. All costs relating to the transport for donation will be borne by the study.

What happens to the brain tissue?

The brain tissue is processed in two ways to allow maximum information to be obtained and to ensure the tissue is of use for many years to come. Half of the tissue is frozen and stored for use in research. The remaining tissue is fixed in formalin to allow for neuropathological diagnosis and research.

Disposal of Tissue

Brain tissue is usually kept for an indefinite period because donated tissue is of immense value for a number of studies carried out over time. Subsequently, tissue samples are disposed of in a lawful, respectful way following Human Tissue Legislation guidelines, unless the family / next of kin specifically wish to do this.

If you become a donor will the information be private and confidential?

Donor details and consent will be entered onto a secure database. Confidentiality will be maintained by coding all entries. Information will only be passed on to other health professionals, such as the GP, with the donor's consent. Data collected by the study will only be analysed by approved members of research groups working on neurodegenerative disorders. Once a donation has occurred the tissue is given a unique identification number and stored securely.

Effects of making a brain donation on funeral arrangements

As the post-mortem is usually carried out within 24-72 hrs after death funeral arrangements should not be delayed. The donor's body is usually released to the undertaker on the day of post-mortem

Will the body be disfigured?
No- after the post mortem mortuary technicians will prepare your relative's body so that open casket or other traditional funeral arrangements can be made.

When should plans be made to ensure brain tissue donation occurs after death?
It is important to the necessary arrangements well in advance so that family members have time to discuss this very important issue. This can be arranged by contacting the Michael Farrell, consultant neuropathologist, Beaumont Hospital. You will receive the relevant consent and information forms along with instructions on how to fill them out so that all the necessary arrangements can be organised.

Does my doctor need to know that I intend to donate my brain upon my death?
It is important to inform your GP of your decision to donate so that they can be called upon to give information about medical records in the event of death.

What if I decide to withdraw my consent?
Consent can be withdrawn at ANY time by contacting the Dublin Brain Bank either by email or telephone at the contact numbers given below.

How long will the tissue be stored and how will it be disposed of?
Brain tissue is usually kept for an indefinite period because donated tissue is of immense value for a number of studies carried out over time. Subsequently, tissue samples are disposed of in a lawful, respectful way following Human Tissue Legislation guidelines, unless the family / next of kin specifically wish to do this.

Can I make a donation to the running of the Dublin Brain Bank?
Yes. The Dublin Brain Bank is a non-profit organisation and appreciates any donations made. Please contact our project coordinator through the following details.

How do I find out more or become a registered brain tissue donor?
Contact the Dublin Brain Bank by phone or e-mail:

Teresa Loftus
Project Coordinator,
Dublin Brain Bank,
Dept Neuropathology,
Beaumont Hospital,
Dublin 9,
Ireland

24 hour messaging service number - 01 7974757

Tel: 01 809 2706
Email: brainbank@rcsi.ie
Website: www.brainbank.ie