Population Studies: Diverse cohorts (Milestone 1.C)
Timeline Start - End2016 - 2024
Research Implementation AreaPopulation Studies and Precision Medicine
Continue to establish new cohorts that include participants across diverse racial, ethnic and socioeconomic backgrounds and incorporate the collection of multi-omic and clinical data (imaging, personal wearables, and sensors for in-home monitoring) to accelerate the identification of genomic variants and other risk and protective factors contributing to the heterogeneity and multifactorial etiology of dementia and to enable the development of predictive models of disease and wellness. Ensure that these cohorts represent the current and future projected population trends.
- Establish at least 3 new cohorts that incorporate deep molecular endophenotyping with participants of African, Native American, Asian, and mixed ancestry, e.g. Latinos, as well as younger cohorts (midlife and younger participants). The phenotyping should include cognitive, behavioral, imaging, exposome measurements, multidimensional “omics” data (generated from the target tissue as well as peripheral tissues) and multiple types of physiologic measurements that can be used for systems biology and gene-environment interaction studies.
- Improve research rigor in cohort studies by incorporating assessment of the impact of social determinants of health (SDOH) and by supporting uniform genotyping/deep sequencing, by standardizing biosamples collection (brain, CSF, blood and stool specimens) as well as blood and CSF biomarker assays.
- These programs should include big-data infrastructure resources to ensure that the data are made available as a public resource and support for collection, storage and rapid distribution of biosamples (e.g., brain tissue, CSF, blood and stool specimens).
Summary of Key Accomplishments
NIA supports a number of life-course studies of diverse populations that collect and share a depth and breadth of data. The HABS-HD study (Health and Aging Brain Study – Health Disparities) is a new cohort study with multi-ethnic participants (1,000 Mexican Americans, 1,000 African Americans, 1,000 non-Hispanic Whites) and has a major focus on participant engagement biobanking and rapid sharing of data.
Another example is the Multi-phasic Health Study, a large life-course study of the oldest-old (90 years+) among non-white minorities to identify risk and protective factors for AD/ADRD; for each participant, rich health data, including disease biomarker data, are collected over 30-50 years.
The Kaiser Healthy Aging and Diverse Life Experiences (KHANDLE) Study is one of the largest life-course cohorts with diverse racial/ethnic composition and prospective clinical, lifestyle, and behavioral data from 1964 -present.
NIA also supports the Harmonized Cognitive Assessment Protocol (HCAP), which enables researchers to measure and understand dementia risk in ongoing longitudinal studies of aging around the world.
The key accomplishments summary is current as of July 2022.
- PAR-15-356: Major Opportunities for Research in Epidemiology of Alzheimer’s Disease and Cognitive Resilience (R01)
- PAR-17-214: Limited Competition: Analysis of Data from NIA's Alzheimer's Disease Sequencing Project Follow-Up Study (U01)
- PAR-18-889: Limited Competition: Renewal of, and Revisions to, the Alzheimer's Disease Genetics Consortium (U01 Clinical Trial Not Allowed) (Reissue of PAR-14-070)
- PAR-18-296 Complex Integrated Multi-Component Projects in Aging Research (U19 Clinical Trial Optional).
- PAR-18-835: Global Brain and Nervous System Disorders Research Across the Lifespan (R01 Clinical Trials Optional)
- PAR-15-349: Health Disparities and Alzheimer's Disease (R01)
- PAR-19-070: Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R01 Clinical Trial Optional)
- PAR-19-071: Research on Current Topics in Alzheimer's Disease and Its Related Dementias (R21 Clinical Trial Not Allowed)
- NOT-AG-18-047 Health Disparities and Alzheimer's Disease (reissue of PAR-15-349 and PAR-15-350 (as R21))
- RFA-AG-19-016: High-Priority Behavioral and Social Research Networks in Alzheimer's Disease and Alzheimer's Disease Related Dementias (R24 Clinical Trial Not Allowed)
- RFA-AG-20-004: Alzheimer’s Disease Research Centers (P30) (re-issue of RFA-AG-19-001)
- 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)
- NOT-AG-21-033: Health Disparities and Alzheimer's Disease
- NOT-AG-21-045: Opportunities for Research in Epidemiology of Alzheimer's Disease and Alzheimer's Disease-Related Dementias (AD/ADRD) and Cognitive Resilience
- RFA-AG-20-023: Exploratory Alzheimer's Disease Research Centers (P20)
- RFA-AG-21-015 Network for Identification, Evaluation, and Tracking of Older Persons with Superior Cognitive Performance for Their Chronological Age (U19 Clinical Trial Not Allowed)
- PAR-21-311: Global Brain and Nervous System Disorders Research Across the Lifespan (R01 Clinical Trial Optional) (Reissue of PAR-18-835)
- PAR-21-319: Global Brain and Nervous System Disorders Research Across the Lifespan (R21 Clinical Trial Optional) (Reissue of PAR-18-836)
Research Programs and Resources
- Alzheimer’s Disease Sequencing Project (ADSP)
- Cohort Studies of Memory in an International Consortium (COSMIC)
- Mexican Health and Aging Study
- NIA Late Onset of Alzheimer’s Disease Family Based Study
- Health and Aging in Africa: A Longitudinal Study of an INDEPTH Community in South Africa (HAALSI)
- National Health and Aging Trends Study (NHATS)
- National Social Life, Health, and Aging Project (NSHAP)
- Health and Retirement Study Harmonized Cognitive Assessment Protocol (HCAP)
- Understanding America Study (UAS)
- ADSP multi-ethnic cohort 1
- ADSP multi-ethnic cohort 2
- Asian Indian cohort
- African American cohort
- African American APOE4 protective factors
- Korean cohort
- Health & Aging Brain among Latino Elders
- Early Onset AD Consortium - the LEAD Study (LEADS)
- US Health and Retirement Study (HRS)
- English Longitudinal Study of Ageing (ELSA)
- Longitudinal Aging Study in India: Diagnostic Assessment of Dementia
- China Health and Retirement Longitudinal Study
- NIA Genetics Initiative for Late-Onset Alzheimer’s Disease (NIA-LOAD)
- Research Network for the Harmonized Cognitive Assessment Protocol (HCAP)
- Alzheimer Biomarker Consortium - Down Syndrome (ABC-DS)
- KBASE2: Korean Brain Aging Study, Longitudinal Endophenotypes and Systems Biology
- Genetic Studies of Alzheimer Disease in Koreans
- Projects funded under RFA-AG-20-023
- 2015 AD Summit: 1B and 3C
- 2018 AD Summit: 2A and 2B
- 2017 Dementia Care Summit: 1.1, 1.2, and 1.3
- 2020 Dementia Care Summit: 1.2, 6.10
- 2021 AD Summit: 1.A, 1.B, 2.D