Methods for Retrospective Multi-site Research

描述(申请人提供)：本项目将发展多点回顾研究的方法。整合来自多个现有来源的数据有可能极大地促进行为研究，特别是在理解复杂的行为障碍方面。阅读障碍被用作开发复杂障碍方法的模型，因为阅读障碍患者之间存在显著的行为异质性，这可以用来更丰富地理解阅读障碍和其他行为特征相同的复杂障碍，如自闭症或注意缺陷多动障碍。将为回溯性多点研究的三个关键阶段制定方法。目标1侧重于主题隐私，包括开发可用于多维数据集的自动数据识别软件工具。目标2的重点是描述复杂疾病样本内和样本之间的行为异质性，[包括使用多重归因来解决多点数据集中的缺失问题。]目标3侧重于如何适当地分析来自不同样本的数据，这些样本包括匹配和不匹配的病例对照研究设计。我们的目标是加强对复杂障碍的行为和生物学研究的质量控制和科学力量，以及促进对阅读障碍的行为和神经生物学的理解。通过制定整合行为和生物数据的标准，回溯性数据库可以用来揭示病因，并为复杂行为障碍的有效治疗建立共识。

DESCRIPTION (provided by applicant): Methods for retrospective multi-site research will be developed in this project. Integrating data from multiple existing sources has the potential to substantially advance the study of behavior, particularly with respect to understanding complex behavioral disorders. Dyslexia is used as a model to develop methods for complex disorders because of the significant behavioral heterogeneity across people with dyslexia that could be used to develop a richer understanding of reading disability and other complex disorders with equally varied behavioral profiles such as autism or attention deficit hyperactivity disorder. Methods for three critical phases of retrospective multi-site research will be developed. Aim 1 is focused on subject privacy, including the development of an automated data de-identification software tool that can be used for multi-dimensional data sets. Aim 2 is focused on characterizing the behavioral heterogeneity within and across samples of complex disorders, [including the use of multiple imputation to address missing-ness in multi-site data sets.] Aim 3 is focused on how to appropriately analyze data from different samples that have included matched and unmatched case-control study designs. Our goal is to enhance the quality control and scientific power for behavioral and biologic studies of complex disorders, as well as advance the behavioral and neurobiological understanding of dyslexia. By developing standards for integrating behavioral and biological data, retrospective databases could be used to reveal etiologies and establish a consensus for the effective treatment of complex behavioral disorders.