Genetic Sample Provision Among National Alzheimer's Coordinating Center Participants
Genetic Sample Provision Among National Alzheimer's Coordinating Center Participants
复制标题
DOI：
10.3233/jad-181159
复制
发表时间：
2019-01-01
影响因子：
4
通讯作者：
Abner, Erin L.
中科院分区：
文献类型：
--
作者：
Bardach, Shoshana H.;Jicha, Gregory A.;Abner, Erin L.
背景资料：遗传数据有助于检测临床前阿尔茨海默病和临床试验的目标个体，使遗传研究参与对痴呆症预防和治疗的持续进步至关重要。目的：了解哪些个人和机构因素可能与阿尔茨海默病中心内提供遗传样本有关。方法：从国家阿尔茨海默氏症协调中心统一数据集（2009-2016）获得的数据与遗传样本的可用性一起沿着。Logistic回归用于评估人口统计学和临床特征对样本提供概率的独立贡献。贡献数据的网站完成了一项简短的调查，探索与遗传research engagement.Results相关的监管和科学问题：在27，519名独特的参与者中，只有一半以上（52.1%）有可用的遗传数据。女性、白色人种、非西班牙裔、认知正常和随访时间超过5年与可用性的可能性更大相关。网站确定拒绝作为最常见的障碍，样品provision.Conclusion，其次是工作人员availability：这些结果突出了战略的重要性，以促进少数民族的参与，并鼓励早期的遗传研究参与。
Background: 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.Objective: To understand what individual and institutional factors may relate to provision of genetic samples within the Alzheimer's Disease Centers.Methods: 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.Results: Just over half (52.1%) of the 27,519 unique participants had genetic data available. Female sex, white race, nonHispanic 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.Conclusion: These results highlight the importance of strategies to promote minority engagement and encourage earlier genetic research participation.