Executive dysfunction as a treatment target for DS clinical trials: An evaluation of its real-world and neural correlates.

项目概要/摘要 正如NIH唐氏综合症（DS）研究计划和INCLUDE项目所强调的那样， 根据研究计划，有必要为研究聚集大量DS患者队列， 审查与健康和福祉有关的风险和复原力因素。这些研究 不仅对DS患者，而且对一般人群中的个体都有影响。母 授予拟议的行政补充检查神经和现实世界的相关性 执行功能障碍（即，认知控制过程中的损伤， 自我调节和完成复杂任务）在年轻的成年人与DS（n=200）。一 现实世界的相关性研究的父母补助金，将是重点的建议 行政辅助是职业成果。具体而言，行政补充 通过完成第二波（在线）数据收集， 成年DS患者的照顾者（目标n=120）专注于职业的两个影响 未在母公司奖励中衡量的成果。第一个是一个重要的，但被忽视的方面， 职业功能，工作准备，或个人的潜在就业能力，基于他们的 “软技能”职业状况（在父母补助金中评估）提供了一个分类 依赖于更广泛的社会特征（例如，经济的）和地方的（例如，服务 的因素）。工作准备提供了一个补充和连续的指标， 独立于这些更广泛和可变的背景/环境因素的职业潜力 影响DS患者的就业。第二，对职业的影响 作为父母补助金扩展的一部分， 重要的背景/环境因素。更具体地说，行政补充 寻求通过定量和定性手段确定潜在的 背景/环境因素（例如，父母的动机，获得交通）， 可能会改变或模糊执行功能障碍和职业成果之间的关系。 通过对职业指标和背景/环境影响的进一步细化， 行政补助金将支持母基金为未来研究奠定基础 研究机制，以优化成人DS的职业成果。

PROJECT SUMMARY/ABSTRACT As highlighted in the NIH Research Plan on Down Syndrome (DS) and the INCLUDE Project Research Plan, there is a need to assemble large cohorts of individuals with DS for studies that examine risk and resilience factors relevant to health and well-being. These studies have implications not only for those with DS but for individuals in the general population. The parent award to the proposed administrative supplement examines the neural and real-world correlates of executive dysfunction (i.e., impairments in cognitive control processes that are important for self-regulation and the completion of complex tasks) in young adults with DS (n=200). One real-world correlate studied in the parent grant that will be the focus of the proposed administrative supplement is vocational outcomes. Specifically, the administrative supplement seeks to extend the parent grant by completing a second wave of (online) data collection from caregivers of adults with DS (targeted n=120) focused on two influences on vocational outcomes not measured in the parent award. The first is an important, but overlooked, aspect of vocational functioning, work readiness, or the individual’s potential employability based on their “soft skills.” Vocational status (as assessed in the parent grant) provides a categorical characterization that is dependent on broader societal (e.g., economic) and local (e.g., service provision) factors. Work readiness provides a complementary and continuous metric of vocational potential independent of these broader and variable contextual/environmental factors influencing employment for individuals with DS. Thus, the second influence on vocational outcomes to be quantified as part of this extension to the parent grant is these critically important contextual/environmental factors. More specifically, the administrative supplement seeks to identify through both quantitative and qualitative means potential contextual/environmental factors (e.g., parent motivation, access to transportation) that are likely to modify or obscure relations between executive dysfunction and vocational outcomes. Through greater refinement of vocational metrics and contextual/environmental influences, the administrative supplement will support the parent grant in setting the stage for future research examining mechanisms to optimize vocational outcomes in adults with DS.