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Attitude of Asian Parkinson Patients towards Clinical Research and Tissue Donation
Parkinson's Disease ( IF 3.2 ) Pub Date : 2020-02-19 , DOI: 10.1155/2020/2542756
Shazma Khan 1, 2 , Joel Y J Foo 3 , Nicole S Y Chia 2, 3 , Sherwin J U Agustin 3 , Shermyn X M Neo 1, 2 , Kay-Yaw Tay 1, 2 , Wing-Lok Au 1, 2 , Adeline S L Ng 1, 2 , Louis C S Tan 1, 2
Affiliation  

Objective. The success of clinical research and tissue donation programs are highly dependent on recruitment of willing volunteers. A comprehensive survey of patient preferences and attitudes can help identify and address barriers hindering the recruitment for research. Method. This is a cross-sectional study on 105 Parkinson’s disease patients who completed an interviewer-administered questionnaire. Results. Out of 105 respondents, 48% of patients had either already participated in clinical research or were keen to participate. About 80% believed clinical research to be safe for their health and privacy. More than 70% of participants were willing to donate blood, urine, or stool, while 16% were agreeable for cerebrospinal fluid sample donation. Motivating factors for clinical research included altruism (64%) and contribution to advance medical knowledge (64%). Common reasons for unwillingness towards clinical research included the risks involved (43%), time constraints (33%), and mobility challenges (24%). Conclusion. The attitude of Singaporean Parkinson patients toward clinical research and tissue donation is encouraging with about half of the participants willing to support clinical research. Three-quarters of patients would support tissue donations. Participation in research may be further increased with greater patient and public education to overcome misconceptions and also by limiting the demands of studies.

中文翻译:

亚洲帕金森患者对临床研究和组织捐赠的态度

客观。临床研究和组织捐赠计划的成功在很大程度上取决于自愿志愿者的招募。对患者偏好和态度的全面调查有助于识别和解决阻碍研究招募的障碍。方法。这是一项针对 105 名帕金森病患者的横断面研究,他们完成了采访者管理的问卷调查。结果. 在 105 名受访者中,48% 的患者要么已经参与过临床研究,要么热衷于参与。大约 80% 的人认为临床研究对他们的健康和隐私是安全的。超过 70% 的参与者愿意捐献血液、尿液或粪便,而 16% 的参与者愿意捐献脑脊液样本。临床研究的激励因素包括利他主义(64%)和对推进医学知识的贡献(64%)。不愿进行临床研究的常见原因包括所涉及的风险 (43%)、时间限制 (33%) 和流动性挑战 (24%)。结论. 新加坡帕金森患者对临床研究和组织捐赠的态度令人鼓舞,大约一半的参与者愿意支持临床研究。四分之三的患者会支持组织捐赠。通过加强患者和公众教育以克服误解以及限制研究需求,可以进一步增加对研究的参与。
更新日期:2020-02-19
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