Alzheimer Biomarker Consortium - Down Syndrome (ABC-DS)-04 Supplement 5
Project Number3U19AG068054-03S2
Former Number5U19AG068054-02
Contact PI/Project LeaderHANDEN, BENJAMIN L Other PIs
Awardee OrganizationUNIVERSITY OF PITTSBURGH AT PITTSBURGH
Description
Abstract Text
There are numerous barriers to research participation in Down syndrome (DS) that are also
complicated by ethnoracial health disparities. A disproportionately higher rate of African
American with DS die as young adults when compared to Whites with DS and little is known
related to differences in risk for a variety of age-related diseases in DS, including Alzheimer’s
disease. The overarching goal of the ADDORE Core is to generate culturally and linguistically
appropriate materials, in collaboration with community at large, for increasing awareness and
engagement of adults with DS from all communities into research aimed at understanding and
treating AD in this population. This core represents a near unique opportunity to engage
researchers and community stakeholders to inform best practices for increasing
diversity and engagement within the DS population. This INCLUDE administrative
supplement is in response to NOT-OD-20-024 and NOT-OD-21-076. This project represents a
unique opportunity to address the intersections between intellectual disabilities and race/
ethnicity. As most medical interventions and research studies have centered on white families
and those without intellectual disabilities, we recognize and have included community members
and those with actual family members with intellectual disabilities as subject matter experts.
Merging these community members with academic subject matter experts will only improve our
training, outreach and effectiveness. A community-led partnership that centers both families of
color and members of the intellectual disability community and their family members will provide
invaluable strategies to center those community members who have been typically excluded
from research.
Public Health Relevance Statement
Contact PD/PI: Handen, Benjamin L
Overall Project Narrative - no change from original submission
Alzheimer’s disease (AD) is a major public health crisis for our aging population. People with Down Syndrome
(DS) are at high risk for AD and because of their unique biology and provide an unparalleled opportunity to
develop biomarkers of preclinical AD. Reliable biomarkers of preclinical AD will enable new options for
intervention and promote health for people with DS and in the general population.
Project Narrative Page 445
NIH Spending Category
No NIH Spending Category available.
Project Terms
AddressAdministrative SupplementAdultAffectAfrican AmericanAgingAlzheimer's DiseaseAlzheimer's disease riskAlzheimer’s disease biomarkerAwarenessBiological MarkersBiologyClinicalCognitive agingCollaborationsColorCommunitiesCommunity OutreachCoupledDiseaseDown SyndromeEducationEducation and OutreachEducational CurriculumEducational MaterialsEffectivenessEnsureEthnic OriginFamilyFamily memberGeneral PopulationGoalsHealth PromotionHearingImmersionIndividualInfrastructureIntellectual functioning disabilityInternationalInterventionIntervention StudiesKnowledgeLearningLinguisticsLongitudinal cohortMedicalMethodsModelingOutcomePersonsPopulationPopulation HeterogeneityProcessPublic HealthRaceResearchResearch DesignResearch PersonnelResourcesRiskTheory of ChangeTrainingTrustUnited States National Institutes of HealthVoiceWorkage relatedaging brainaging populationanti-racismcohortcommunity based participatory researchdesignethnic minorityexperiencehealth disparityhealth equityhigh riskimprovedimproved outcomeliteracymaltreatmentmembermodel buildingpopulation healthpre-clinicalprogramsracial and ethnicracial minority populationracismrecruitresearch studyresponsestudy populationsymposiumtoolunderserved communityyoung adult
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