Objective: A comprehensive survey of patient preferences and attitudes towards clinical trials and tissue donation can help identify and address barriers hindering the recruitment for research.

Background: The success of clinical trials and tissue donation programs are highly dependent on recruitment of willing volunteers. The inability to recruit an adequate number of participants puts the credibility of these crucial studies in jeopardy. As researchers are facing problems with patient participation in research globally, this study is specially designed to observe this trend in Singaporean population.

Method: This is a cross-sectional study on 105 Parkinson’s disease patients who presented to the neurology clinics of a tertiary care hospital. After being screened for eligibility by their primary physician, participants completed an interviewer-administered questionnaire.

Results: Out of 105 respondents, 58 (55.2%) were males and 47 (44.8%) females; with mean age being 67±8.46 years. Most patients were Chinese (84%). Fifty-one (48.6%) patients had either already participated in clinical trials or were keen on participating. A greater number of participants (n=84; 80%) believed the trials to be safe for their health and privacy. Seventy-five (71%) participants were willing for blood, urine or stool donation while 17(16%) were agreeable for cerebrospinal fluid sample donation. Regarding brain donation, the majority concurred that they would not take offense if asked about it (n=73; 70%), 82(78%), acknowledged the importance of brain donation for research, and 73(70%) believed that their donated samples would be handled professionally. Fifty-two (50%) participants were willing to consider donating their brain for research while 9% remained undecided. Motivating factors for brain donation included altruism (87%) and contribution in medical knowledge advancement (80%). Reasons for being unwilling to donate their brains were stress for family (30%), disfigurement of body (25%), and having a conservative mindset (23%).

Conclusion: The attitude of Singaporean Parkinson patients toward clinical trials and brain donation was encouraging with about half of the participants willing to support such research. Three-quarter of patients would support other tissue donations. Participation for such research may be further increased with greater patient and public education to overcome misconceptions and mindsets.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/attitude-of-parkinson-patients-towards-participation-in-clinical-trials-and-brain-or-tissue-donation-for-research/