University of Kentucky, Lexington, KY, USA.
J Alzheimers Dis. 2019;69(1):123-133. doi: 10.3233/JAD-181159.
Genetic data help detect preclinical Alzheimer's disease and target individuals for clinical trials, making genetic research engagement critical for continued advancement in dementia prevention and treatment.
To understand what individual and institutional factors may relate to provision of genetic samples within the Alzheimer's Disease Centers.
Data from the National Alzheimer's Coordinating Center Uniform Data Set (2009-2016) were obtained along with genetic sample availability. Logistic regression was used to assess independent contributions of demographic and clinical characteristics to the probability of sample provision. Sites contributing data completed a brief survey exploring regulatory and scientific issues related to genetic research engagement.
Just over half (52.1%) of the 27,519 unique participants had genetic data available. Female sex, white race, non-Hispanic ethnicity, normal cognition, and greater than 5 years of follow-up were associated with greater probability of availability. Sites identified refusals as the most frequent barrier to sample provision, followed by staff availability.
These results highlight the importance of strategies to promote minority engagement and encourage earlier genetic research participation.
遗传数据有助于发现临床前期的阿尔茨海默病，并为临床试验确定目标人群，因此遗传研究的参与对于痴呆症预防和治疗的持续进展至关重要。
了解个体和机构因素与阿尔茨海默病中心内提供遗传样本之间的关系。
从国家阿尔茨海默病协调中心统一数据集（2009-2016 年）中获取数据，并获得遗传样本的可用性。采用逻辑回归评估人口统计学和临床特征对样本提供概率的独立贡献。参与数据收集的站点完成了一项简短调查，探讨了与遗传研究参与相关的监管和科学问题。
在 27519 名独特参与者中，只有略多于一半（52.1%）的人有遗传数据。女性、白种人、非西班牙裔、认知正常和随访时间超过 5 年与更高的遗传数据可用性相关。站点将拒绝作为提供样本的最常见障碍，其次是工作人员的可用性。
这些结果强调了促进少数民族参与和鼓励更早进行遗传研究参与的策略的重要性。
