Marshall Carly, Havis Isabelle, Herreshoff Emily, Lewis Cate, Kotagal Vikas
1Department of Neurology, University of Michigan, Ann Arbor, MI, USA.
2Veterans Affairs Ann Arbor Health System (VAAAHS) & VAAAHS Geriatric Research Education and Clinical Center (GRECC), Ann Arbor, MI, USA.
Gerontol Geriatr Med. 2022 May 18;8:23337214221094184. doi: 10.1177/23337214221094184. eCollection 2022 Jan-Dec.
BACKGROUND/OBJECTIVES: The equitable enrollment of minority participants in synucleinopathy trials is an emerging public health concern. Differing views regarding risk disclosure may influence research involvement in at-risk adults.
We conducted a brief mailed survey, including questions about trust and hypothetical risk disclosure preferences, to 100 participants in the Healthier Black Elders Center cohort in Detroit, MI and 100 participants in the Claude D. Pepper Older Americans Independence Center Research Participant Program at the University of Michigan.
125 recipients without a diagnosis of a neurodegenerative disorder returned the survey, 52 (41.6%) of whom identified as being Black or African American. Black respondents reported less trust in medical providers (t=2.02, =0.045) and medical researchers (t=2.52, =0.013) and a greater desire to be informed about the presence of unchangeable risk factors for neurodegenerative disorders (t=2.02, =0.045).
These findings have implications for the recruitment of representative populations in prodromal neurodegenerative research.
背景/目的：在突触核蛋白病试验中公平招募少数族裔参与者是一个新出现的公共卫生问题。关于风险披露的不同观点可能会影响有风险的成年人参与研究。
我们对密歇根州底特律市健康黑人老年人中心队列的100名参与者以及密歇根大学克劳德·D·佩珀老年美国人独立中心研究参与者项目的100名参与者进行了一次简短的邮寄调查，包括关于信任和假设的风险披露偏好的问题。
125名未被诊断患有神经退行性疾病的受访者回复了调查，其中52人（41.6%）认定为黑人或非裔美国人。黑人受访者对医疗服务提供者（t=2.02，P=0.045）和医学研究人员（t=2.52，P=0.013）的信任度较低，并且更希望了解神经退行性疾病不可改变的风险因素的存在情况（t=2.02，P=0.045）。
这些发现对前驱神经退行性疾病研究中代表性人群的招募具有启示意义。
