What is the Brain Donation Programme?
The purpose of the brain donation programme is to recruit individuals who wish to donate their brain or other biological material (blood, cerebrospinal fluid) to scientific research and it is open to adults of all ages, both those affected by neurological diseases (Alzheimer’s disease or other neurodegenerative diseases) and healthy individuals. Participants must be at least 18 years old. Research in this field depends on the willingness of healthy people (without neurological diseases) to donate their brains. It is crucial, for scientists, to have an in-depth understanding of the anatomy and function of the healthy (“control”) brain, with which to then compare diseased brains. Only in this way is it possible to discover the changes that normally occur with advancing age and distinguish them from those that are, instead, disease-related. This is the only way of shedding light on the mechanisms that lead to certain brain diseases and finding treatments for them. It is also extremely important to be able to study individuals who remained mentally lucid at a very advanced age, in order to discover their “secret” and identify factors protecting against brain ageing.
Why join the Brain Donation Programme?
Brain donation is a generous act that can benefit both the donor’s family and the research community. Autopsyandneuropathological examination can confirm the clinical diagnosis, establishing beyond doubt the neurological disease that affected the donor. Confirmation of the diagnosis can also help family members to reach closure following a sometimes long journey of care for their loved one. It also constitutes information that becomes part of the family’s medical history, and could be an important element to disclose in future medical consultations. Furthermore, some types of dementia are inherited as a result of certain genetic factors, meaning that the disease will already have occurred in the affected individual’s ancestors and may be more likely to recur in his/her descendants. Analysing biological samples from a donor with an inherited form of dementia is one way of helping to discover the cause and find a cure for future generations. In addition, anincreased rate of diagnostic confirmation would allow the institutions (Health Ministry, local health authorities) responsible for funding and organising care and for funding research to create more preciseepidemiologicalregisters of these diseases. A person who chooses to donate his/her brain is helping scientific research to find treatments for these currently incurable diseases and allowing future generations to invest hope in an eventual cure.
What being a donor involves
Being a donor has never entailed and never will entail any costs or expenses, but neither is it a source of financial gain. However, it does have a series of advantages: donors receive, free of charge, a battery of blood tests and a neuropsychological assessment and are also entitled to attend, again without charge, events organised by the Golgi-Cenci Foundation, both recreational and staged for the purpose of disseminating scientific information. The donor will remain anonymous and all information relating to him/her will remain strictly confidential. Should a prospective donor at any point change his/her mind, he/she can simply fill out a form in order to withdraw from the programme without having to give any explanation.
For more information, please download the information leaflets.