Clinical Translational Core

临床转化核心

• 批准号: 9228907
• 负责人: JOHN A. COLOMBO
• 金额: $ 15.85万
• 依托单位: UNIVERSITY OF KANSAS LAWRENCE
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-22 至 2021-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9228907
• 关键词: Academic Medical Centers; Administrator; Adult; Advocate; Age; Autistic Disorder; Behavioral; Child; Child Development; Child health care; Childhood; Cities; Clinic; Clinical; Cognitive; Communities; Consultations; Databases; Development; Developmental Delay Disorders; Developmental Disabilities; Diagnosis; Diagnostic; Down Syndrome; Electronic Health Record; Event; Fragile X Syndrome; Funding; Geographic Locations; Goals; Healthcare; Hospitals; Housing; Human; Human Resources; Individual; Infant; Institutional Review Boards; Intellectual functioning disability; Kansas; Laboratories; Link; Maintenance; Mental Retardation and Developmental Disabilities Research Centers; Mission; Narration; Parents; Participant; Patients; Pattern; Phenotype; Population; Prevention; Process; Rare Diseases; Records; Recruitment Activity; Registries; Research; Research Personnel; Research Project Grants; Research Support; Resources; Rett Syndrome; Sampling; School-Age Population; Schools; Science; Scientist; Services; System; Translational Research; Universities; University Hospitals; Work; age group; autism spectrum disorder; base; cost effective; design; experience; genetic information; high risk; meetings; programs; prospective; repository; school district; success; tool; translational study

The Clinical Translational Core (CTC) of the Kansas Intellectual and Developmental Disabilities Research Center (KIDDRC) seeks to directly serve and facilitate translational research functions within its portfolio of projects. The CTC is designed to meet the needs of the work in those research themes by centralizing, integrating, and standardizing a set of functions that will allow KIDDRC projects to recruit well-characterized participants for its portfolio of human translational studies in an efficient manner. While these services will facilitate work by investigators already conducting research with human participants, they will also be extremely valuable to basic scientists who have not previously conducted research with human populations, as they provide a means for identifying individuals with Fragile X, Prader-Willi, and Rett Syndromes as well as capacity for the deep phenotyping required for supporting research on IDD subtypes and rare disorders. The objective of the CTC is to provide high-quality, cost-effective support to KIDDRC research programs in the recruitment of well-characterized participants with IDD and controls. Given the KIDDRC portfolio, the CTC emphasizes recruiting pediatric samples, but we also provide capacity to recruit adults with IDD. To achieve this, the CTC has established the goal of providing KIDDRC PIs with greater access to potential participants and with ongoing support with tools to facilitate recruitment and retention of individuals with IDD into their studies. This objective is being met in several ways. First, the CTC will provide KIDDRC investigators with access and assistance in identifying potential research participants through four registries: (1) an integrated data repository linked to electronic health records at KUMC, as well as to other regional databases that access records of individuals with IDD; (2) continuing to build a registry based on a regional clinic to which children are referred for a potential diagnosis of autism spectrum disorders (ASD) or developmental delays (this registry will be integrated with the KUMC repository); (3) a registry of facilities that house, advocate for, or otherwise serve individuals with IDD across Kansas and 14 other states derived from a partnership with the Kansas University Center for Excellence in Developmental Disabilities (UCEDD); and (4) centralization and maintenance of a registry containing information on typically-developing (TD) infants and children that has been used to support normative research on developmental science. The core will also provide support for investigators needing assistance with human behavioral phenotyping of IDD conditions, by assisting investigators with establishing and maintaining partnerships with school districts in Kansas City-Lawrence-Topeka corridor, and by sponsoring investigators’ presence and visibility at community and commercial events targeted to specific populations and age groups.

堪萨斯智力和发育障碍研究的临床转化核心 (CTC) 中心（KIDDRC）致力于直接服务和促进其投资组合中的转化研究功能 CTC 旨在通过集中、满足这些研究主题的工作需求。 整合并标准化一组职能，使 KIDDRC 项目能够招募具有良好特征的人才 参与者以有效的方式参与其人类转化研究组合，而这些服务将。 促进已经与人类参与者进行研究的研究人员的工作，他们也将 对于以前没有对人类进行过研究的基础科学家来说非常有价值，因为 它们提供了一种识别患有脆性 X 综合征、普瑞德威利综合征和雷特综合征的个体的方法 支持 IDD 亚型和罕见疾病研究所需的深度表型分析能力。 CTC 的目标是为 KIDDRC 研究项目提供高质量、具有成本效益的支持 招募具有 IDD 和控制能力的具有良好特征的参与者 鉴于 KIDDRC 的投资组合，CTC。 强调招募儿童样本，但我们也提供招募患有IDD的成年人的能力。 为此，CTC 制定了为 KIDDRC PI 提供更多接触潜在参与者的机会的目标 并通过工具提供持续支持，以促进 IDD 患者的招募和留用 这一目标可以通过多种方式实现。首先，CTC 将为 KIDDRC 调查人员提供资料。 通过四个登记处获取和协助确定潜在的研究参与者：(1) 数据存储库链接到 KUMC 的电子健康记录以及可访问的其他区域数据库 IDD 患者的记录；(2) 继续根据儿童就诊的地区诊所建立登记册； 转诊以进行自闭症谱系障碍 (ASD) 或发育迟缓的潜在诊断（该登记处将 (3) 容纳、倡导或以其他方式提供服务的设施登记册 与堪萨斯大学合作，为堪萨斯州和其他 14 个州的 IDD 患者提供服务 发育障碍卓越中心 (UCEDD)；(4) 集中和维护 包含典型发育 (TD) 婴儿和儿童信息的注册表，已用于支持 发展科学的规范性研究也将为需要的研究人员提供支持。 通过协助研究人员确定 IDD 状况的人类行为表型 与堪萨斯城-劳伦斯-托皮卡走廊的学区保持合作伙伴关系，并通过 赞助调查人员在针对特定群体的社区和商业活动中的存在和知名度 人口和年龄组。