Tel. Office: +353-1-8092633
Tel. Laboratory: +353-1-8092631
Fax: +353-1-8092955
Dr. M. Farrell: +353-86-2566677
Dr. F. Brett: +353-87-2461176
________________________________________________________________________________________________
Guidance notes for completion of Declaration of Intent to make a
brain donation
This information should be read in conjunction with the leaflet ‘Brain donation for research into Neurodegenerative
disorders’.
Thank you for considering making a brain donation to the Dublin Neurological Diseases Brain Bank.
Please read the information below before proceeding to the “Donor Registration” and “Intention to Donate”
forms found on pages 3-6 in this information pack.

In all instances, it is considered appropriate that the next of kin co-signs ‘The Intention to Donate Form’ with the
patient / individual considering donation. This is because, at the time of death, written consent will need to be
obtained from the next of kin. In order to ensure minimal distress to family members at the time of a donor's death, it
is thought best to ask the next of kin to co-sign the ‘Intention to Donate Form’.

If the individual on whose behalf you are co-signing the ‘Intention to Donate Form’ has ever expressed an objection to
post-mortem examination / brain donation, please tick "Yes" and provide details.

A limited post-mortem examination involving the head is usually sufficient for the majority of brain donations.
However, in the case of Motor Neurone disease and Frontotemporal dementia, the spinal cord donation will also
require permission for the examination of the chest and abdomen.

If you wish to donate organs for medical research, then section: ”Agreement to organs being taken and
retained for diagnosis, research and medical education” must also be completed such that you do not object to
the brain and / or spinal cord being taken and stored indefinitely by Dublin Neurological Diseases Brain Bank and
used for medical research and education.

Consent is also required for the release of medical records following the death of a donor.

With regards to disposal of tissues / organs, it is most appropriate to indicate that the Dublin Neurological Diseases
Brain Bank at Beaumont Hospital will respectfully dispose of tissue after use in various research projects (following
Human Tissue Authority Guidelines). However, if you have a specific wish to have tissue repatriated, then tissue
Dublin Neurological Diseases Brain Bank Intention to Donate
samples / organs can be returned to the family for burial or cremation. Please note that this may be a significant
period of time, usually months, after the funeral.
Thank you for your kindness and consideration.
If you have any other queries relating to the completion of the consent form, please do not hesitate to contact the Brain
Bank.
Important information for families of donors
Once the intention to make a brain donation has been made, to ensure that the brain donation can take place at the
appropriate time, the decision should be made known to the donor's nearest relatives, together with the executor(s) of
the Will. The donor's General Practitioner and solicitor should also be informed of any such decision.
We would be grateful if arrangements could then be made for the completion and return of the Dublin Neurological
Diseases Brain Bank “Intention to Donate form” to the Dublin Brain Bank.
Copies must be held by:
The Brain Bank
The next of kin
The General Practitioner
The Nursing home or hospital (if donor is hospitalized).
At the time of death, the Brain Bank will arrange and pay for the body to be transferred from the funeral
directors to Beaumont Hospital for the removal of the brain (and any other organs bequeathed for research),
and for return of the body via the funeral directors so that the family can continue with funeral arrangements.
In general, there is usually no delay in the funeral arrangements except perhaps on Bank Holiday weekends.
If there are any queries about the process, please do not hesitate to contact the Brain Bank.
Instructions for contacting the Brain Bank
The Brain Bank is very grateful for the donations it receives and the contributions to research made by donors and their
families at what is an extremely distressing time.
In the event of death where consent to brain tissue donation has been given, please telephone:
+353-1-8092631 (Office hours: 9-5, Monday-Friday)
as soon as possible so that the Brain Bank can make appropriate arrangements. It is important to note that certification
of death must be completed before instructions can be given to remove consented tissue.
Outside office hours, at weekends and bank holidays, the Brain Bank apologises for the fact that it may, depending on
the time of death be unable to make post-mortem arrangements until the next working day. However deaths occurring
after 5 pm on a Friday should be notified to the neuropathologist-on-call. The name and number of the neuropathologiston-call can be obtained from the Beaumont Hospital Switch Board [+353-1-8093000]. The neuropathologist will advise
as to when and where the post mortem will be carried out.
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Dublin Neurological Diseases Brain Bank Intention to Donate
DONOR REGISTRATION FORM
Please complete this form and return in the enclosed envelope
Name___________________________________________________________________________________________
Address (Home / Nursing Home / Hospital)
________________________________________________________________________________________________
________________________________________________________________________________________________
Telephone ___________________________________________
Date of birth__________________________________________
Do you have a neurological disorder
YES / NO?
If YES please name it______________________________________________________________________________
Contact (if Donor is in nursing home / hospital
care)____________________________________________________________________________________________
Consultant caring for donor (if applicable) ____________________________________________________________
Consultant telephone ________________________________
How did you hear about the Dublin Neurological Diseases Brain Bank?
________________________________________________________________________________________________
NEXT OF KIN DETAILS
Name___________________________________________________________________________________________
Address________________________________________________________________________________________
________________________________________________________________________________________________
Telephone____________________________________________
Relationship to
donor__________________________________________________________________________________________
GP DETAILS
Name___________________________________________________________________________________________
Surgery Address_________________________________________________________________________________
________________________________________________________________________________________________
Telephone____________________________________________
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Amended October 2008
Dublin Neurological Diseases Brain Bank Intention to Donate
DECLARATION OF INTENT TO DONATE MY BRAIN TO THE DUBLIN
NEUROLOGICAL DISEASES BRAIN BANK
Please initial appropriate boxes
1)
I agree to donate my whole brain for confirmation of clinical diagnosis and for research. I
understand how the brain will be donated and the tissue retained. I understand that giving my
brain for this research is voluntary and that I am free to withdraw my consent at any time
without giving a reason.
YES
NO
2)
I understand that the neuropathological examination may occasionally reveal an inherited or
genetic disease and that a clinical genetic test may be necessary in determining a definite
diagnosis.
YES
NO
I agree to donate my spinal cord, if it is necessary, to aid confirmation of clinical diagnosis and
for research purposes
YES
NO
I agree that the brain will retained for us for:
YES
NO
YES
NO
Many neurological conditions are not inherited. In the majority of cases the close relatives of a
person with a neurological condition are at no greater risk of developing the disease than
anyone else. However, in a small number of cases problems with a particular gene can cause
these conditions which can sometimes be inherited.
3)
(a) medical research medical research in Ireland
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Dublin Neurological Diseases Brain Bank Intention to Donate
4)
(b) medical and scientific education and audit
YES
NO
(c) the development of diagnostic tests and drugs with commercial organisations
YES
NO
(d) research with collaborators at other academic departments in Ireland and worldwide
YES
NO
(e) genetics (DNA) research purposes
YES
NO
5)
I agree that members of the research team may look at my medical records (All information
will remain strictly confidential)
YES
NO
6)
I agree that my details can be stored on a database in accordance with the Data Protection
Act 2003
YES
NO
7)
I understand that the results of genetic and other research will not be available on an
individual basis. If and when such results are published they will be anonymised.
YES
NO
8)
I agree that all decisions regarding the future use of my donated tissue will be made by
member of staff of the Dublin Neurological Disease Brain Bank, who will organise the lawful
and respectful disposal of any remaining tissue after research studies are completed, in
compliance with the Human Tissue Act 2004.
YES
NO
………………………………………
Your Name (CAPITALS)
……………………………………...
Your Signature
………………….
Date
………………………………………
Witness’s Name (CAPITALS)
……………………………………...
Witness’s Signature
………………….
Date
If you are unable to complete this form yourself, it is acceptable for a relative or appointed representative to do this for you.
Please complete form and return in the enclosed envelope
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Amended October 2008