grant
Down Syndrome Clinical Cohort Coordinating Center (DS-4C) for the INCLUDE Project
Organization RESEARCH TRIANGLE INSTITUTELocation RESEARCH TRIANGLE PARK, UNITED STATESPosted 20 Sept 2024Deadline 31 Aug 2029
NIHUS FederalResearch GrantFY2025AffectAwarenessClinicalCollaborationsCollectionCommunicationCommunitiesComplexComputer Software ToolsComputer softwareDataData CollectionData Coordinating CenterData Coordination CenterData Management CoreData SetDevelopmentDown SyndromeElectronic Health RecordEnsureFosteringGenomicsGoalsHealthHistoryImageIndividuals with down syndromeInformaticsIngestionInstitutionInternationalInvestigationInvestigatorsLaboratoriesLangdon Down syndromeLeadershipMeasuresMissionMongolismOutcomeParentsParticipantPatient RecruitmentsPersonal SatisfactionPhenotypePreparationPrincipal InvestigatorProcessProgram DevelopmentProtocolProtocols documentationQuality ControlQuality IndicatorRecording of previous eventsReportingResearchResearch PersonnelResearch ResourcesResearchersResolutionResourcesSecureSiteSoftwareSoftware ToolsStandardizationStructureSurvey InstrumentSurveysSystemSystems DevelopmentTechnical ExpertiseTimeTrisomy 21Underrepresented GroupsUnderrepresented PopulationsUniversitiesWorkbiobankbiorepositorychromosome 21 trisomychromosome 21 trisomy syndromecloud basedco-morbidco-morbiditycohortcommunity engagementcomorbiditycomplex datacongenital acromicria syndromedata de-identificationdata deidentificationdata exchangedata harmonizationdata hubdata ingestiondata integrationdata managementdata management and coordinating centerdata management centerdata qualitydata sharingdata standardizationdata standardsdata transferdata transmissionde-identified datadeidentified datadevelopmentaldigital healthdown syndrome individualsdown syndrome patientselectronic health care recordelectronic health medical recordelectronic health plan recordelectronic health registryelectronic medical health recordengagement with communitiesexperienceharmonized datahealth equityhistoriesimagingimprovedingestlife spanlifespanmembermorbus Downoutreachparentparticipant enrollmentparticipant recruitmentpatient enrollmentpatients with down syndromepeople with down syndromephenotypic datapreparationsprogramsprotocol developmentpseudohypertrophic progressive muscular dystrophyrecruitresolutionssharing hubsoftware toolkittechnical skillstechnology platformtechnology systemtooltrisomy 21 syndromeunder representation of groupsunder represented groupsunder represented peopleunder represented populationsunderrepresentation of groupsunderrepresented peoplewell-beingwellbeing
Description preview
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…
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