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‘Gift of Hope’ – motivation for brain donation into schizophrenia research

Published online by Cambridge University Press:  24 June 2014

R Wilson ,
P Terwee ,
T Garrick  and
C Harper
R Wilson
Affiliation:
Neuroscience Institute of Schizophrenia and Allied Disorders (NISAD)
P Terwee
Affiliation:
The Rhumbline Group
T Garrick
Affiliation:
Neuroscience Institute of Schizophrenia and Allied Disorders (NISAD) Discipline of Pathology, University of Sydney, Sydney, Australia
C Harper
Affiliation:
Discipline of Pathology, University of Sydney, Sydney, Australia
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Abstract

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Type
Abstracts from ‘Brainwaves’— The Australasian Society for Psychiatric Research Annual Meeting 2006, 6–8 December, Sydney, Australia
Information
Acta Neuropsychiatrica , Volume 18 , Issue 6 , December 2006 , pp. 312
Copyright
Copyright © 2006 Blackwell Munksgaard

Background:

Schizophrenia is an illness that is unique to humans and animal models are of limited use. Consequently, NISAD has established a brain tissue bank and an associated premortem donor program called the Gift of Hope (GOH). This program invites people aged 18 years and over to donate their brain (after death) for research into Schizophrenia. The main benefit of GOH is that it provides researchers with high-quality, well-characterized tissues. This study is designed to identify why individuals are motivated to become donors in such a program.

Methods:

Participants from the GOH database, who have a Sydney metro postal address, were selected to receive the paper-based, 26-item questionnaire that was developed by the ‘Using Our Brains’ group. It consisted of both open-ended and fixed responses designed to collect demographic information and the participant's comments on their reasons for donation.

Results:

Forty-five participants completed and returned the questionnaire, a response rate of 60% (n = 74). Personal experience of the illness was reported by 50% of the participants as their main reason for donating. A further 22% donated in the hope of improving knowledge and research in the area and 17% donated for altruistic reasons.

Conclusions:

These preliminary results suggest that personal experience of schizophrenia, which includes being a family member of someone with the illness, is the key motivating factor when it comes to brain donation for the GOH program.