Abstract:
Alzheimer's disease and related dementias (ADRD) represent a healthcare crisis of epic proportions as the US
populations continues to age. The AD Research Centers (ADRC) and the NeuroBiobank (NBB), both funded
by NIH, represent two separate networks both focused on promoting and supporting human brain research, the
former focused on ADRD in well-characterized prospective cohorts with the deepest expertise and
infrastructure for ADRD neuropathology, and the latter with the broadest network with well-established
coordination across center, outreach pipelines, and data and tissue sharing mechanisms. The 2017 ADC
Panel Recommendations included multiple focused on ADRD neuropathology, including developing
mechanisms for inclusion of donors from underrepresented groups and non-demented (control) donors,
increasing engagement with and opportunity for local communities to participate in brain donation, and
enhancing collaborations across the ADRC and NBB networks to promote brain donation and research brain
tissue utilization by scientists focused on ADRD. In response, an ADRC-NBB working group was established to
explore opportunities to meet this need, resulting in formation of a pilot program to test some of these
solutions. This proposal is for support of the UW site for this pilot study, which has five aims that, when
successfully completed, will develop, implement, and test mechanisms across ADRC and NBB to identify and
consent ADRD brain donors, including controls, in a coordinated manner nationally, to collect brains from
consented donors who pass using procedures optimized for maximum tissue quality for research, to perform
state-of-the-art neuropathological examination, to supplement this data with critical donor metadata through
structured family interviews and medical records reviews, to share this deidentified information across the
networks and with researchers across the US, and to fill data and tissue requests from these donors, based on
this infrastructure, to support ADRD research. When successfully completed, this pilot study will have helped
identify effective mechanisms/protocols/pipelines to support human brain donation and research that will
ultimately help propel ADRD research toward mechanistic knowledge, improved diagnostic strategies, and
effective therapeutic interventions.
Public Health Relevance Statement
Project Narrative
There are opportunities to improve human brain donation and ADRD research by leveraging successful
aspects of ADRC and NeuroBiobank networks. This pilot develops, implements, and test pathways to bridge
these networks to advance ADRD research through increased donor access, coordinated protocols, and
tissue/data sharing.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AbbreviationsAddressAdverse effectsAgeAlzheimer's DiseaseAlzheimer's disease related dementiaAmyloid beta-ProteinAreaAutopsyAwarenessBiological AssayBrainBrain InjuriesBrain regionClinicalClinical DataClinical DistributionClinical TrialsCognitiveCollaborationsCollectionCommunicationCommunitiesConsentDataData SetDatabasesDocumentationEnrollmentFamilyFundingFutureGenerationsGoalsGuidelinesHealthcareHeterogeneityHumanImpairmentImprove AccessIndividualInformed ConsentInfrastructureInterviewKnowledgeLewy Body DiseaseMeasuresMedical ExaminersMedical RecordsMetadataMultiomic DataNeurodegenerative DisordersOutcomeParticipantPathologicPathway interactionsPatientsPersonsPharmacologyPilot ProjectsPopulationPopulation HeterogeneityPreparationProceduresProspective cohortProtocols documentationRecommendationRegistriesReproducibilityResearchResearch PersonnelResourcesSamplingScientistSignal TransductionSiteStandardizationTestingTherapeutic InterventionTherapeutic StudiesTissue BanksTissuesUnderrepresented PopulationsUnited States National Institutes of HealthUniversitiesWashingtonaging brainbasebiobankbiological heterogeneitybrain researchbrain tissuecomorbiditydata resourcedata sharingdiagnostic strategyfamily structurehigh standardhippocampal sclerosishuman tissueimprovedmeetingsmind controlmolecular phenotypeneuropathologynon-dementedoutreachpreservationprogramsprotein TDP-43responders and non-respondersresponsesymposiumtau-1therapeutically effectivetissue resourcetraining opportunityworking group
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