Sharpening a Focus on Race in Applied Research Carl V. Hill, Ph.D., M.P.H. Director, Office of Special Populations National Institute on Aging Twitter: @hillcv17 1

NIH Today Conducts research in its own laboratories Supports research of non-Federal scientists In universities, medical schools, hospitals, and research institutions throughout the United States and overseas Helps train research investigators Fosters communication of medical information

National Institutes of Health on Alcohol Abuse and Alcoholism of Arthritis and Musculoskeletal and Skin Diseases National Cancer Institute on Aging of Child Health and Human Development of Allergy and Infectious Diseases of Diabetes and Digestive and Kidney Diseases of Dental and Craniofacial Research on Drug Abuse of Environmental Health Sciences National Eye National Human Genome Research National Heart, Lung, and Blood of Neurological Disorders and Stroke of Nursing Research National Library of Medicine of Biomedical Imaging and Bioengineering NIH Clinical Center Center for Information Technology National Institute of Minority Health and Health Disparities Office of the Director National Center for Advancing Translational Sciences for Scientific Review for Complementary And Integrative Health Fogarty International of General Medical Sciences National Institute on Deafness and Other Communication Disorders of Mental Health

NIA Mission Established in 1974 to support and conduct research on: aging processes age-related diseases special problems and needs of the aged Train and develop research scientists Provide research resources Disseminate information on health and research advances

NATIONAL INSTITUES OF HEALTH National Institute on Aging Organizational Structure Office of the Director Richard J. Hodes, M.D. Marie A. Bernard, M.D. Intramural Research Program Luigi Ferrucci, M.D., Ph.D. Michele K. Evans, M.D. Division of Extramural Activities Robin Barr, D.Phil. Sanoj Suneja, Ph.D. Division of Aging Biology Felipe Sierra, Ph.D. Ronald Kohanski, Ph.D. Division of Geriatrics and Clinical Gerontology Evan Hadley, M.D. Winifred K. Rossi, M.A. Division of Behavioral and Social Research John Haaga, Ph.D. Dana Plude, Ph.D. Division of Neuroscience Eliezer Masliah, M.D. Brad Wise, Ph.D.

AD/ADRD Targeted Increases $425 M in additional appropriations 2011 2012 2013 2014 2015 2016 2017 2018 2019 National Alzheimer’s Project Act (NAPA) $50 M* redirected within NIH budget $40 M* redirected within NIH budget $100 M additional approp $25 M additional approp $350 M additional approp $400 M additional approp $414 M additional approp $425 M in additional appropriations as of 09/28/18 *one-year money Years displayed are Fiscal Years

Recruitment to a growing AD/ADRD workforce Over 1/4 of NIA’s Alzheimer’s and related dementias awardees from Fiscal Year 2015-2018 were either new or early stage investigators Over 1/3 of NIA’s Alzheimer’s and related dementias awardees were new to the field

Alzheimer’s Disease and Related Dementias African Americans are about twice as likely to have Alzheimer’s or other dementias as older whites. Some studies indicate Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older whites Genetic factors do not appear to account for differences in prevalence or incidence among racial groups. (Alzheimer’s Association, 2019)

NIA Health Disparities Populations* Blacks/African Americans Hispanics/Latinos American Indians/Alaskan Natives Asian Americans Native Hawaiians and Other Pacific Islanders Socioeconomically Disadvantaged Populations Rural Populations Disability Populations Sex and Gender Minorities (SGM) *Public Law 106-525, Minority Health and Health Disparities Research and Education Act of 2000

NIA Health Disparities Research Framework Priority Populations Environmental Levels of Analysis Sociocultural Biological Behavioral What are pathways among determinants that create and sustain health disparities? Source: Hill, Perez-Stable, Anderson & Bernard, Ethnicity & Disease, 2015

Health Disparities Research Related to Aging “The appearance of crime among the southern Negroes is a symptom of wrong social conditions – of a stress of life…To be a poor man is hard, but to be a poor… in a land of dollars is the very bottom of hardships”  - W.E.B. DuBois “The Souls of Black Folk” 1903

Diversity in ADRD Clinical Research Trials Study % African American Purpose of Study Cache County Study on Memory in Aging <1 To explore the relationship between age-related cognitive and motor decline and the risk of AD ADNIGO 3.1 To examine biomarkers in early stage of AD progression by including early MCI ADNI-2 4.3 To develop CSF, blood, and imaging biomarkers as predictors of cognitive decline and outcome measures ADNI-1 4.8   To develop CSF, blood, and imaging biomarkers as outcome measures using national cohort subjects WHI-Cog 7.0 To explore the causal relationship between depressive symptoms in postmenopausal women and MCI/dementia Mayo Clinic Study of Aging <7.1 To establish a population-based cohort for studying the prevalence, incidence, and risk factors of MCI and dementia DoD-ADNI 7.1 To use imaging/biomarkers to establish the biological connections between TBI, PTSD and AD in Vietnam War veterans SPRINT-MIND 29.9 To examine the role of risk factors for AD on its progression and late-life cognitive decline in a 12-year longitudinal study WHICAP 34.6 To use imaging biomarkers to compare brain region volumes among multiethnic cognitively normal elderly Well…while we know that the intersection of (right hand) acquiring health protecting resources and (left hand) experiencing hardship, bias and discrimination might point directly to African Americans as a priority health disparities population for ADRD…this has yet to be confirmed by researchers…for a number of reasons. First…an initial push to understand Alzheimer’s Disease and Related Dementias has somewhat understandably focused on understanding risk factors for the population at large… And we also know that the measurement of Alzheimer’s Disease has stirred quite debate…possibly causing inconsistencies in reported prevalence for various demographic populations… But as we see in the slide…and probably most important… is the varied and mostly low percentages of African Americans that are enrolled and retained in ADRD Clinical Trials. Pay off: In addition thinking about health disparities research that explores the role of environmental and social resources…the NIA has been interested in understanding ways to best recruit cohorts for ADHD Clinical Trials that are diverse…and permits population comparisons and ultimately health disparities research Source: Shin & Doraiswamy, Frontiers in Aging Neuroscience, 2016

Sharpening a Focus on Race – Next Steps Diverse Recruitment/Retention (Outreach, Engagement) Locating Pathways from Environmental to Biological Factors for Racial/Ethnic Populations – Culture, Collective Responses Leveraging Analytic Methods to Expand Opportunities in Aging-related Health Disparities Research Interdisciplinary Team Science that includes Basic Scientists Identifying “malleable” intervention targets along these pathways …well interestingly enough, there is a emerging (NOT NEW) science here at NIH that allows for a systematic, congressionally mandated… assessment of health differences by social class, race, ethnicity and geography…called health disparities research. Early findings indicate that: Environmental Sociocultural Behavioral …and biological factors are critical for understanding and addressing health disparities. However, relationships between these factors are not as clearly understood. How do environmental, sociocultural, behavioral and biological factors link to sustain health disparities? What phenomena might help us make connections and theorize pathways?

NIA Health Disparities Research Framework. www NIA Health Disparities Research Framework www.nia/disparities/framework Showcases NIA-funded research projects that address health disparities related to aging Potential applicants are able to peruse NIA priorities and investments in this important area of aging research This tool also includes links to keystone papers and current related funding opportunities

CONTACT Carl V. Hill, Ph.D., M.P.H. Director, Office of Special Populations National Institute on Aging (NIA) National Institutes of Health (NIH) hillcv@mail.nih.gov www.nia.gov/health-disparities Twitter: @hillcv17