[Research resource network and Parkinson disease brain bank donor registration program in Japan]

Abstract

In spite of the increasing need for brain tissue in biomedical research, overall brain banking activities in Japan has been lagging behind. On the initiative of the National Center of Neurology and Psychiatry, 2 projects have been carried out; the Research Resource Network (RRN) and the Parkinson's Disease Brain Bank (PDBB) donor registration program. RRN is a nation-wide network that links 15 brain repositories, and 1,463 autopsy brains have been registered in this network as of December 2009. The brain donor registration program for PDBB was established in 2006. A donor without cognitive impairment can enroll in this PDBB donor registration program. When the donor dies, the next-of-kin will contact the PDBB coordinators for subsequent autopsy services and brain retention. On obtaining the next-of-kin's consent at the time of donor's death, autopsy will be performed at PDBB collaborating hospitals of National Center of Neurology and Psychiatry, Juntendo University Hospital, and Tokyo Metropolitan Geriatric Hospital. In order to arouse public interest, lecture meetings for citizens have been held on a regular basis. Fifty individuals have registered in the PDBB donor registration program including 27 patients with PD, 4 patient with Parkinson syndrome, 1 patient with progressive supranuclear palsy, and 18 individuals without PD or related disorders as of December 2009. Autopsies have been performed for 2 of these donors. To promote brain banking activities,it is necessary to establish legal and ethical guidelines for the use of autopsied materials in biomedical research.