title: [Associations of patients and tissue banks].
abstract: Research dealing with tissue is more important to day than ever. Techniques of molecular genetics have indeed permitted the identification of a large number of new proteins that have now to be localised in the tissue and in the cell, in health and disease. This step has to be made in order to elaborate the adequate animal models in which new therapeutics can be tested. In France, however, human tissue samples have become difficult to obtain. Many factors contributed to this situation. Autopsies are now exceptionally performed. Doctors feel confident in their diagnosis and express rarely the need to control it. Families are opposed to post mortem more strongly than before, especially when the reasons for performing it can not be explained before the death of the patient. French law now makes the explicit consent of the patient mandatory before any research. This practically limits all post mortem investigations to those that had been planned before death. The possibility of giving tissue post mortem to allow research has to be publicised, particularly by associations of patients. The organisation that should manage to collect and store the samples at a large scale and over the whole country is lacking. Its structure is still discussed: should it be supported by the state itself, by private funding, possibly by the associations of patients themselves? Patients Associations are ready to play a crucial role: they realised that the present system was inefficient, they are presently trying to organise tissue banks; they will finally have to explain to their members why they should care for research, how they could help and how they will have to accept the absence of immediate spectacular results.
authors.affiliation: Laboratoire de Neuropathologie R. Escourolle, Hôpital de La Salpêtrière.
authors.forename: C
authors.initials: C
authors.lastname: Duyckaerts
authors.forename: B
authors.initials: B
authors.lastname: Joly
authors.forename: V
authors.initials: V
authors.lastname: Sazdovitch
authors.forename: J J
authors.initials: JJ
authors.lastname: Hauw
authors.forename: J H
authors.initials: JH
authors.lastname: di Donato
mesh_terms: D005602:France; D006801:Humans; D010361:Patients; D012952:Societies; D014015:Tissue Banks / Q000191:economics / Q000331:legislation & jurisprudence / Q000458:organization & administration*