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Population Studies: Endophenotyping at-risk and resistant cohorts

Enable precision medicine research by supporting deep and longitudinal molecular endophenotyping of existing and new at-risk cohorts as well cohorts and/or individuals who resist disease despite high genetic risk (e.g. Down Syndrome, ApoE 4 homozygous, FAD mutation carriers). Ensure that these efforts include and prioritize molecular profiling in cohorts from special populations and patients with atypical AD and ADRD (Down Syndrome, early- and late-onset familial AD, early-onset non-autosomal dominant AD), ethnic minorities and other under-represented groups.

2030 PAR-14-070: Limited Competition: Renewal of, and Revisions to, the Alzheimer's Disease Genetics Consortium (U01) PAR-18-889: Limited Competition: Renewal of, and Revisions to, the Alzheimer's Disease Genetics Consortium (U01) PAR-15-316: Limited Competition for the Renewal of the National Cell Repository of Alzheimer's Disease (NCRAD) (U24) PAR-15-356: Major Opportunities for Research in Epidemiology of Alzheimer’s Disease and Cognitive Resilience (R01) RFA-AG-15-011: Biomarkers of Alzheimer’s Disease in Down Syndrome (R01) RFA-AG-15-010: Interdisciplinary Research to Understand the Vascular Contributions to Alzheimer’s Disease (R01) PAR-16-406: Limited Competition: Additional Sequencing for the Alzheimer's Disease Sequencing Project (U01) PAR-16-047: The NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS) (U24) RFA-AG-16-001: Genome Center for Alzheimer’s Disease (GCAD) (U54) RFA-AG-16-021: Collaborative Aging (in Place) Research Using Technology (CART) (U2C) PAR-17-054: Leveraging Existing Cohort Studies to Clarify Risk and Protective Factors for Alzheimer’s Disease and Related Dementias (R01) PAR-17-214: Limited Competition: Analysis of Data from NIA's Alzheimer's Disease Sequencing Project Follow-Up Study (U01) RFA-AG-17-061: Interdisciplinary Research to Understand the Complex Biology of Resilience to Alzheimer’s Disease Risk (R01) RFA-AG-18-012: Mobile Monitoring of Cognitive Change (U2C) RFA-AG-18-029: Interdisciplinary Research to Understand the Complex Biology of Resilience to Alzheimer’s Disease Risk (R01) RFA-AG-19-001: Alzheimer’s Disease Research Centers (P30) (re-issue of RFA-AG-16-018) RFA-AG-20-004: Alzheimer’s Disease Research Centers (P30) (re-issue of RFA-AG-16-018) PAR-20-099: Harmonization of Alzheimer’s Disease and Related Dementias (AD/ADRD) Genetic, Epidemiologic, and Clinical Data to Enhance Therapeutic Target Discovery (U24 Clinical Trial Not Allowed) PAR-20-110 (Reissue of PAR-16-047): National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (U24 Clinical Trial Not Allowed) RFA-AG-21-014: National Alzheimer’s Coordinating Center (U24 Clinical Trial Not Allowed) RFA-AG-16-002: Alzheimer's Disease Sequencing Project (ADSP) Replication Phase Analysis Studies (U01) NOT-AG-18-053: Notice to Specify High-Priority Research Topic for PAR-19-070 and PAR-19-071 NOT-AG-21-020: Maximizing the Scientific Value of Secondary Analyses of Existing Cohorts and Datasets in Order to Address Research Gaps and Foster Additional Opportunities in Aging Research NOT-AG-21-045: Opportunities for Research in Epidemiology of Alzheimer's Disease and Alzheimer's Disease-Related Dementias (AD/ADRD) and Cognitive Resilience NOT-AG-21-033: Health Disparities and Alzheimer's Disease PAR-21-212: Limited Competition: Alzheimer’s Disease Sequencing Project Follow-Up Study 2.0 (ADSP FUS 2.0): The Diverse Population Initiative (U01 Clinical Trial Not Allowed) RFA-AG-23-020: Building Infrastructure for Precision Medicine Research on Minority Health and Disparities in Alzheimer’s Disease (AD) and AD-Related Dementias (ADRD) (UH2/UH3 Clinical Trial Not Allowed) RFA-AG-24-001: Alzheimer's Disease Research Centers (P30 Clinical Trial Not Allowed) (Reissue of RFA-AG-21-019) RFA-AG-24-027: Building Neuroscience Research Infrastructure for Alzheimer's Disease (AD) and AD-Related Dementias (ADRD) in Africa (UG3/UH3 Clinical Trial Not Allowed) NOT-AG-24-042: Notice of Special Interest (NOSI): Major Opportunities for Research in Epidemiology of Alzheimer's Disease and Alzheimer's Disease-Related Dementias (AD/ADRD) and Cognitive Resilience 1.A In Progress Enable precision medicine research by supporting deep and longitudinal, molecular endophenotyping of existing and new, at-risk cohorts as well cohorts and/or individuals… DN 2015 AD Summit Recommendations: 1A, 2A, 2B, and 3A 2018 AD Summit: 2C and 3B Blog: NCRAD poised for major expansion Blog: NIAGADS! We have data! News: Decoding the molecular ties between vascular disease and Alzheimer's News: NIH supports new studies to find Alzheimer's biomarkers in Down syndrome News: Guidelines proposed for newly defined Alzheimer’s-like brain disorder News: NIH augments large scale study of Alzheimer’s disease biomarkers News: NIH expands nation’s Alzheimer’s and related dementias research capacity Blog: Collaboration, culture, coordination: Keys to supporting brain donation Blog: Working from home? Check out new genetics data for Alzheimer’s disease research! Workshop: Alzheimer’s Disease Genetics Global Symposium Workshop: Alzheimer’s Disease Genetics Global Symposium Agenda ADSP Functional Genomics Consortium (FunGen-AD) Highlight: Genetic variant specific to African ancestry is associated with increased Alzheimer’s risk Blog: Join us this fall to help enhance dementia study diversity Blog: Apply by Feb. 14: Funding to expand Alzheimer’s research infrastructure in Africa Workshop: The Future of Population-Based Studies in Alzheimer’s Disease and Related Dementia Research: Setting Future Scientific Priorities Blog: The journey to healthy aging: Lessons from around the world Workshop: Cognitive Aging Summit IV Population Studies and Precision Medicine 4RTau Neuroimaging Initiative (4RTNI) Alzheimer’s Biomarkers Consortium – Down Syndrome (ABC-DS) ADRCs Neuorpathology & Biospecimen Resource Locator Tool Alzheimer’s Disease Neuroimaging Initiative (ADNI) Alzheimer’s Prevention Initiative (API) Biomarkers in Older Controls at Risk for Dementia (BIOCARD) Dominantly Inherited Alzheimer’s Network (DIAN) FrontoTemporal Dementia Neuroimaging Initiative (FTDNI) Longitudinal Early-onset Alzheimer’s Disease Study (LEADS) Longitudinal Evaluation of Familial Fronto-Temporal Dementia Study (LEFFTDS) Molecular Mechanisms of Vascular Etiology of AD (M2OVE-AD) NIA Genetics Initiative for Late-Onset Alzheimer’s Disease (NIA-LOAD) Wisconsin Registry for Alzheimer’s Prevention (WRAP) Collaborative Aging Research Using Technology (CART) OHSU ADRC: Digital Technology Core Framingham Heart Study – Brain Aging Program Health & Aging Brain among Latino Elders AD Knowledge Portal NIA Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS) National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) How Researchers Can Tap Into Data and Samples From Alzheimer’s Disease Research Centers Brain Donation: A Gift for Future Generations Brain Donation Social Media Toolkit Precision Aging Network: Closing the Gap Between Cognitive Healthspan and Human Lifespan NACC Down Syndrome Module Diabetes and brain amyloid in middle aged Hispanics Cognitive Superager Networks: Study to Uncover Pathways to Exceptional Cognitive Resilience in Aging (SUPERAging) Cognitive Superager Networks: Resilience/Resistance to Alzheimer's Disease in Centenarians and Offspring (RADCO) 2016

Initiate at least 6 research programs to support:

Longitudinal as well as postmortem collection and rapid distribution of biosamples from brain and peripheral tissues in existing and newly launched cohorts across diverse population groups.
Generation of high-quality, multi-omic data (genomic, epigenomic, proteomic, metabolomics, microbiome) as a public/community resource to maximize data accessibility and usability for downstream analyses.
Collection of non-traditional data modalities to complement the rich phenotypic clinical and molecular data, using wearable sensors and mobile health technologies.
High-quality data curation, annotation and data storage/big data infrastructure to ensure that the data are made broadly and rapidly available as a public resource according to FAIR data standards.

Summary of Key Accomplishments

Population studies are the foundation for precision medicine. Since 2016, NIA has supported more than 100 epidemiologic studies through two targeted funding initiatives. NIA supports additional cohort studies aimed at characterizing the risk and protective factors for AD/ADRD across different age groups.

NIA supports five longitudinal studies of aging/AD led by a multi-disciplinary team of investigators at the Rush AD Research Center, with one study focused exclusively on Latinos and two studies of mostly African American participants. The data collected in these cohorts is shared rapidly with the research community via the NIA-supported Rush AD Research Resource Sharing Hub.

Other large, deeply-phenotyped cohorts include: the AD Neuroimaging Initiative), the Longitudinal Early-Onset Alzheimer’s Disease Study, the Dominantly Inherited Alzheimer’s Network, and the Health and Aging Brain Study – Health Disparities.

Each of these studies focuses on participant engagement, longitudinal data collection, rigorous evaluation of AD biomarkers, biospecimen banking, and rapid sharing of data.

The key accomplishments summary is current as of July 2022.