Frequently Asked Questions

The Neuro-CEB biobank collects post mortem tissues for research from patients suffering from Alzheimer's disease or related pathology (fronto-temporal dementia with ou without amyotrophic lateral sclerosis, vascular dementia), Parkinson disease or related pathology (progressive supranuclear palsy, corticobasal degeneration, multiple system atrophy), multiple sclerosis, amyotrophic lateral sclerosis and cerebellar diseases. People without neurological disorders can also register as donors. Their samples will serve as controls for research. People who donate their brain for research fill a questionnaire that is sent to the medical and scientific coordination of the biobank and that will help deciding if the donation may be gratefully accepted or has to be declined (because not funded by the Patients' Associations or because unsuited for research, generally because of multiple types of lesions). This questionnaire is sent on request by the coordinator. 
The Neuro-CEB brain donation program is limited to donors living within the French territory.

There is no age limit for brain donation. The study of samples from aged people is important.

The procedure of "donation of the body to science" has been devised to collect bodies for the teaching of anatomy in schools of medicine. The cost of the funerals are taken care of by the faculty of medicine. In practise, it is impossible to combine donation of the body and brain donation: the aims of the two procedures are different and are not constrained by the same time schedule. In the brain donation program, the cost of the transport of the corpse is covered by the patients' associations, but not the cost of the funeral.

The post mortem removal of organs for tranplant is possible when the patient is brain dead. Numerous alterations then affect the brain (ischemia, trauma,...) and usually make it unsuitable for scientific study. When a donation has been made both for transplant and for science, the former will always be chosen to the detriment of the latter, according to French law.

"The human body, its elements and its products can not be the object of a patrimonial right" (French Civil Code article 16-1). For this legal reason, nobody except the person herself or himself has the right to allow a post mortem brain donation. However, the current (2018) French law considers that it is legal to perform post mortem studies as long as the person has not expressed his or her opposition in the national computerized register of refusal. In practise, the next of kin may testify to the patient's wishes. The national register of refusal is always consulted before brain removal, as requested by law.

The brain (comprising both hemispheres, brainstem, and cerebellum) is removed. If the pathology of the donor includes lesions of the spinal cord, it can be also removed and sampled at different levels. Some research projects may involve the study of other tissues, neurological or not (muscle or digestive tissue for example). In this case, a specific consent for these samples will be requested from the donor's relatives.

On average, the organization of the brain removal delays the funeral by approximately 48 hours. The removal itself takes about two hours but the time taken by the transport of the body, the compulsory administrative procedures, and the availability of the infrastructure (autopsy room and specialized medical staff) lengthen the duration of the whole procedure. The procedure cannot be undertaken on weekends and holidays (except in Paris where brain removal can be organized on Saturday morning).

The removal of the brain are done by medical doctors. When belonging to the Neuro-CEB network, they are committed to handle the body as respectfully as possible, as indicated in the charter of the Biobank. The brain is removed through an incision that is made in the back of the head and goes from one ear to another. The incision is hidden in the scalp and is usually not visible in a person lying on its back. It may be noticed in a person with partial or total baldness, and in this case the doctor may decide to put a bandage around the head. Please notice that the staff of the autopsy room where the brain is removed are not funeral agents. It is up to the staff of the funeral home appointed by the family to carry out the care (toilet, dressing, hairstyle, makeup) that will be used to present the deceased. It is advisable to let the agent of the funeral home prepare the body before the family sees it, especially if it has been transported just after brain removal.

One cerebral hemisphere (randomly left or right) is sampled.

• Some samples are frozen on dry ice, or in liquid nitrogen, for biochemical analyses, DNA or RNA extractions.
• Small (around 2 x 2 cm) samples are mounted on cork, frozen in isopentane cooled liquid nitrogen, for histologic sections (thickness: 30 μm, cryostat sections).

The other hemisphere is sampled and fixed in buffered formaldehyde for 3 months.

Other types of conditioning can be developed to meet the scientists' needs.

The brain, cerebellum and brainstem are removed. Only the upper cervical cord is generally available (spinal cord is taken entirely for diseases with spinal lesions such as multiple sclerosis or amyotrophic lateral sclerosis).

The following subcortical nuclei are systematically sampled: lenticular nucleus (including putamen and pallidum), caudate nucleus, thalamus, subthalamic nucleus, nucleus basalis of Meynert, amygdala, substantia nigra.

The following cortical areas are systematically sampled: middle frontal gyrus, superior temporal gyrus, motor cortex, supramarginal gyrus, visual cortex.

The autopsy and sampling protocols may be adapted in a prospective way for specific needs.

The PMD may vary from 24 to 48 hours, with an average of 30 hours.

The definition of an adequate control case depends on the study. Control cases are difficult to collect in all Brainbank, and the Brainbank NeuroCEB has had also difficulties in finding good matches to patients' cases. Most of the control cases are older than 60 years; many of them have early lesions of AD.

The mean delay is 1.5 months. It includes the delay to obtain the agreement of the Research Department of Pitie-Salpetriere Hospital, and to prepare the samples.

The biological material is free, according to French law. But a compensation is required to cover the costs incurred by the collection, preparation and conditioning of the samples. The prices have been calculated with the standards of the French health insurance system.

Alzheimer disease, Fronto-Temporal Dementia, Vascular Dementia, Lewy Body diseases (including Parkinson disease and dementia with Lewy body), Steele-Richardson-Olzewski disease (progressive supranuclear palsy, PSP), Multiple-System Atrophy, Cortico-Basal Degeneration, Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Cerebellar Ataxia, controls.