Research Triangle Institute

Include Down Syndrome Clinical Cohort Coordinating Center (DS-4C) - Project Summary/abstract the Overarching Goal of the Proposed Include Clinical Cohort Coordinating Center (DS-4C), Co-led by Investigators at Rti International and Emory University, Is to Improve the Health and Well-being of Individuals With Down Syndrome (DS) by Supporting the Include Project’s DS Cohort Development Program (ds-cdp). in This Capacity, the DS-4C Will Serve as the Central Hub for Orchestrating and Integrating All Components of the Ds-cdp, Including Overseeing the Development and Implementation of a Common Protocol to Guide Harmonized Data Collection Across Multiple DS Cohort Research Sites (ds-crs) in the Ds-cdp and Facilitating Data Transfer Into the Include Data Coordinating Center (DCC) and Data Hub for Availability to Researchers. the Complex Structure of the Ds-cdp Requires the DS-4C’S Expert Leadership and Coordination to Generate an Effective, Integrated, Unified Network to Achieve the Goal of Generating Deep Phenotyping Data and Collecting Biospecimens in a Large, Diverse Cohort of Individuals With DS Across the Lifespan to Support Future Research Efforts to Improve Ds-associated Co-morbidities. the Four Cores of the DS-4C (administrative, Cohort, Outreach, and Data Management) Will Leverage the Expertise of Core Staff and Work Collaboratively to Provide Administrative Support to Facilitate Collaboration and Communication Across the Ds-cdp; Ensure Seamless Implementation of the Protocol; Implement and Support Inclusive Outreach Efforts to Facilitate Inclusion and Representation in Recruitment; and Manage the Flow of Data and Biospecimens From the Ds-crs to the Include DCC and Data Hub and Ds-biorepository, Respectively. Our Specific Aims Are as Follows: Aim 1: Implement Tools and Systems to Foster Seamless Integration and Operational Efficiency Within the DS-4C and Across the Ds-cdp. Aim 2: Provide Expertise and Resources to Develop and Implement the Common Protocol Across the Ds-cdp While Enhancing the Scientific Rigor of Ds-crs Studies to Maximize the Scientific Impact of the Include Project. Aim 3: Enhance Community Engagement, Facilitate Recruitment of Participants and Team Members From Typically Underrepresented Groups, Advance Health Equity Goals, and Promote Awareness of the Include Program. Aim 4: Manage the Flow of Data From Ds-crs Into the Include DCC and Data Hub for Access by the DS Research Community. the DS-4C Will Be Led by Multiple Principal Investigators, DR. Hunter at Rti and DR. Rosser at Emory, With a Collaborative History and Extensive Expertise in Elucidating Health Outcomes of Individuals With DS Through Phenotypic Protocol Development, Biospecimen Collection, Multi-site Recruitment Efforts, and Data Harmonization. the Proposed DS-4C Is Immediately and Amply Prepared to Support Its Mission to Develop Clinically Meaningful Findings That Positively Impact Those Affected by DS.