Brain donation programme
Help research: donate your brain!
How to navigate all the donations?
You're familiar with organ donation: its primary purpose is therapeutic (the organs removed will improve another person's life).
Body donation to science, on the other hand, is intended for teaching purposes. The body is returned to the family after a certain period of time.
Brain donation can only be made postmortem: it is intended solely for research. It does not delay funerals.
Neurological diseases (Alzheimer's, Parkinson's, multiple sclerosis, etc.) are numerous, and their treatment is not yet sufficiently effective. One of the obstacles to understanding these diseases is that their study requires brain removal and autopsy.
Professor Pierre Maquet, head of the neurology department at the University Hospital of Liège, is the trusted person and contact for brain donation at the University Hospital of Liège: "When I was a young doctor, when a death was unexplained, an autopsy was automatically performed. Today, this is no longer the case. The population has become hostile to this fundamental examination. It is therefore essential to call on donors who participate in this project by signing an informed consent agreement during their lifetime." This patient's decision is then entered into their Electronic Medical Record and lists them as a "nervous system donor after death" and the patient receives a donor card. Knowing that certain neurological conditions are transmitted genetically, families must understand that authorizing an autopsy of a loved one can also be useful to them. The procedure is performed with the same ethical rules as on a living donor and the body of the deceased is returned to the family directly after the operation, without it being visible. The deceased can therefore be presented to their loved ones as usual.
Why make a brain donation?
The brain remains the most difficult organ to study and certainly one of the least understood. Brain diseases remain among the most disabling and difficult to diagnose and treat: stroke, epilepsy, Alzheimer's and Parkinson's diseases, etc.
These diseases would be better diagnosed and treated if we knew more about their causes and mechanisms. Brain donation contributes to a better understanding of brain diseases and the development of new treatments.
Brain donation is a voluntary and gracious act by which, after death, the patient authorizes the removal of their brain, spinal cord, and cerebrospinal fluid, which bathes the central nervous system. In rare cases, a skin sample is also useful.
Brain donation does not disfigure the deceased: it is removed from the back of the head. It does not prohibit the coffin from being left open at a later date if the planned funeral arrangements so stipulate. Spinal cord sampling requires an incision along the back. This will be invisible once the body is prepared. A skin sample is most often taken from a leg.
What happens to the "anonymized" samples?
At the family's request, a neuropathological examination can be performed for diagnostic purposes. The diagnosis can then be communicated to the family by the patient's physician, in accordance with current ethical rules.
More importantly, the material is stored at the Liège University Hospital Biobank (BHUL). Researchers may then access it within the specific framework of research approved by an ethics committee.
In more detail, some samples are fixed for microscopic examination. Others are stored at low temperatures so that they retain their qualities and characteristics for many years: analysis of proteins, DNA, or other molecules, many of which are still unknown to us because they will only be identified in the future.
The University Hospital of Liège and the BHUL are organizations accredited for the collection and use of human samples.
The samples are stored in the Liège University Hospital Biobank (BHUL), in the designated premises at the University Hospital of Liège. These are accessible only to BHUL managers or duly identified researchers whose research project has been reviewed by scientific committees and an accredited university hospital ethics committee. The samples are also anonymized by a code known only to BHUL managers. This code is the only information included on the research documents (microscope slides, biochemical analyses, etc.).
The BHUL samples are not only made available to researchers in Liège: researchers from the Wallonia-Brussels Federation and the European Union have access to them according to the same criteria.
The results of scientific research are published based on examinations of samples collected from large groups of patients. The anonymity of the data studied is guaranteed.
When the samples are no longer usable for research, they are destroyed.
How to become a donor?
Any adult, healthy or ill, can register as a donor.
You don't necessarily have to have suffered from a neurological condition to be a donor. On the contrary! Samples from people not suffering from any neurological condition are of paramount importance, as they serve as references against which samples from neurological patients are compared.
The potential donor must be an adult residing in Belgium. The only step required is to complete the informed consent form. This document must also be signed by a trusted person, most often the spouse, one of the children, a parent, or an acquaintance.
Once the hospital has received formal informed consent, the patient is registered as a donor with the BHUL. They will receive a donor card to keep with them. They will also be asked to complete a questionnaire regarding their lifestyle and medical history. This information will be stored anonymously through the assignment of a code.
Patients should not hesitate to inform their family members of their legacy so that they can make the necessary decisions upon their death. If they wish to volunteer for brain donation, patients should remember to disclose any documents expressing their opposition to brain donation, documents they may have provided to the municipal administration, for example.
Any change in the patient's personal circumstances must also be communicated to the hospital (e.g., change of address, primary care physician, or trusted person):
- By post: Neurology Department, CHU Liège B35, 4000 Liège
- By phone: +32 4 323 72 55
- By email: doncerveau@chuliege.be
If the patient changes their mind and no longer wishes to donate their brain, they simply need to withdraw their consent in writing. The reasons for this withdrawal do not need to be specified, and the patient's medical care will not be affected by this decision.
What to do when the donor dies?
It is an emergency. The brain deteriorates very rapidly after death. Therefore, the time between death and brain donation must be as short as possible. The trusted person is therefore asked to notify the hospital if and when the donor's health deteriorates significantly.
Once the death certificate has been issued by a doctor,
The trusted person must contact the on-call neurologist at Liège University Hospital (04/323.41.12). They will activate the neuropathology team.
The deceased must be transported as quickly as possible (within 4 hours) by the funeral home of your choice to the Liège University Hospital morgue.
Once the samples have been taken, the body is returned to the family the same day, who may dispose of it according to the deceased's wishes. The costs of transporting the body to Liège University Hospital and its return to the location designated by the family, as well as the costs associated with the collection, are covered by the Liège University Hospital Neurology Department. The usual funeral expenses are covered by the family.
However, the neurology department cannot accept bequests in the following cases:
The time between death and the removal of a brain sample is too long, due to the circumstances of the death.
The body must be autopsied for legal reasons.
A message to general practitioners
The genetic inheritance of many conditions is increasingly being highlighted (particularly neurological, oncological, cardiological, etc.). Knowing a patient's genealogical history is therefore very useful for their own care. An autopsy can provide very useful information for this purpose. General practitioners play an essential role in informing patients, particularly regarding the merits of autopsies, as well as supporting those who wish to donate a brain. These two methods are, for neurological diseases, the best way to advance research.
