WP07 - Donor Program
The main objectives of the WP 7 are:
  • providing guidance and advice on the best ways to establish a successful donor program;
  • sharing experience with regard to approaching of public and donor recruitment;
  • providing systematic review of the public attitudes towards autopsy and organ donation;
  • increasing public awareness of the need for brain donors;
  • publicizing the need for national brain donor programs;
  • advocating more funding for such programs.

Scientific research of neurological or psychiatric diseases relies strongly on readily available human CNS tissue, which can only be obtained in sufficient quantities through post mortem retention of brain, spinal cord and nerve tissue. Availability of such tissue becomes ever more problematic as the autopsy rates decline steadily throughout Europe.

Alternative methods for tissue procurement, such as donor programs potentially form a great resource for extremely well-documented research materials and have considerable scientific and ethical advantages. The open nature of donor recruitment promotes public understanding and support for scientific research. The voluntary element safeguards the principles of autonomy and self-determination of the participating individuals.

Scientifically the donor programs carry a great advantage. Due to the short post-mortem delay and a customized clinical characterization, tissue collected through such programs results in research material of higher quality. A short post-mortem delay, achieved by a rapid autopsy donor program, preserves the cellular and molecular components of the material, making it exceptionally suitable for sensitive research techniques applied for genomic and proteomic analyses, staining or post mortem cell-line and tissue cultures.

Customized clinical characterization of the research material can be achieved by the follow-up of the living person registered as a donor.
Setting up a donor program is can be very challenging, as the success of the program fully rests upon the availability of formidable resources.  Amongst others these are:

  • sufficient funding, 
  • availability of trained personnel to recruit and inform donors,
  • day and night availability of neuropathologist and technical staff to perform an autopsy;
  • sound infrastructure for communication and transportation; 
  • seamless coordination and management of the above-mentioned processes and resources.

In order to set up and maintain a successful donor program, longstanding commitment of affiliated institutions and funding organizations is indispensable.
The NBB, set up 1985, has one of the most successful running brain donor programs in Europe and has accumulated a great deal of experience on the best ways to approach the public for the purpose of donor recruitment. As the leader of WP 7 the NBB aims to share this experience with Consortium partners and to provide guidance on the best ways to establish a donor program to the interested Brain Banks.

Workpackage Leader

Dr. Inge Huitinga

Phone: +31 (20) 566 5499 
Fax: +31 (20) 691 8466 
Dr. Inge Huitinga

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