Core B: Clinical Translational Core

临床翻译核心B将：(1)使智力和发育障碍(IDD)相关 加速病因、相关临床特征和新的临床研究的临床研究 IDD干预措施；(2)将非传统方法纳入IDD研究，包括实用的临床 学习保健系统内的试验和远程干预研究，以及(3)加强IDD的纳入 通过向调查团队提供必要的工具，将人口转化为正在进行的(非缺碘)研究 以及支持这些人口的培训。这些努力将促进将IDD患者纳入正在进行的 临床和转化性研究，特别是在以前被排除在外的研究中。这个 CORE的服务包括：(1)以定向咨询的形式向IDDRC研究小组提供实际支持 为范德比尔特量身定做的“条件不可知性”资源，如 招聘创新中心， 实施临床试验的招募和保留战略，以满足缺碘人群的需要；(2) 维持和扩大两个研究登记处，一个是自闭症谱系障碍研究，另一个是唐氏症研究 综合症；(3)电子健康记录和遗传数据库数据拉取咨询；(4)各种 支持远程研究的方法，包括在线研究门户和远程保健研究方法； 以及(5)向非IDD研究小组提供实际支持，以加强纳入研究，包括修改 IDD人群的电子同意(EConsend)。这些服务都是对调查人员需求的响应 以及通过以下方式传播，为当地和全国的IDD研究增加价值 国家网络。总体而言，核心B的服务侧重于鼓励非传统研究人员(如： 那些没有从事IDD研究的人)从事IDD研究；使涉及非传统的研究成为可能 参与者(例如，IDD患者通常被排除在正在进行的临床研究之外)；并促进使用 将非传统方法(例如，实用试验、远程研究)纳入IDD研究工作。因此，核心B的 活动使IDD研究能够从研究设计到招募/同意以最佳方式进行，以 实施，并扩大努力，以便在非IDD中更恰当地代表IDD患者 研究性研究。这些活动加在一起将加速与IDD相关的发现，这些发现将导致高影响 干预和治疗，从而改善IDD患者和家庭的生活。

The Clinical Translational Core B will: (1) enable intellectual and developmental disabilities (IDD)-related clinical research to accelerate translational studies of the causes, associated clinical features, and new interventions in IDD; (2) incorporate non-traditional approaches into IDD research, including pragmatic clinical trials within learning healthcare systems and remote interventional studies and (3) enhance inclusion of IDD populations into ongoing (non-IDD) research studies by providing investigative teams with the necessary tools and trainings to support these populations. These efforts will facilitate inclusion of people with IDD into ongoing clinical and translational research, especially in studies from which they have previously been excluded. The Core’s services include (1) hands-on support to IDDRC research teams in the form of targeted consultations that tailor “condition-agnostic” Vanderbilt resources such as the Recruitment Innovation Center, which implements recruitment and retention strategies for clinical trials, to the needs of IDD populations; (2) maintenance and expansion of two research registries, one for autism spectrum disorder and one for Down syndrome; (3) consultation on data pulls for electronic health records and genetic databanks; (4) various methods to enable remote research, including online research portals and telehealth research approaches; and (5) hands-on support to non-IDD research teams to enhance inclusion in studies, including modifying Electronic Consent (eConsent) for IDD populations. These services are both responsive to investigator needs as well as generative in adding value to IDD research locally and nationwide, via dissemination through national networks. Overall, Core B’s services are focused on encouraging non-traditional researchers (e.g. those not working on IDD) to become engaged in IDD research; enables research involving non-traditional participants (e.g. people with IDD typically excluded from ongoing clinical research); and facilitates the use of non-traditional approaches (e.g. pragmatic trials, remote research) into IDD research efforts. Thus, Core B’s activities enable IDD research to be conducted optimally from study design to recruitment/consent, to implementation, and also expands efforts to more appropriately represent those with IDD in non-IDD ongoing research studies. Together these activities will accelerate IDD-related discoveries that will lead to high-impact interventions and treatments, thus improving the lives of those with IDD and families.