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.
The Clinical Translational Core of the Kansas Intellectual and Developmental Disabilities Research Center supports investigators conducting research on the causes, prevention, management, and treatment of intellectual and developmental disabilities by providing them with ongoing assistance with tools to facilitate recruitment and retention of individuals with IDD into their studies.
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