Gaps and Opportunities for Real-World Data Infrastructure
National Institute on Aging (NIA)
On May 4, 2022, the National Institute on Aging (NIA) convened a panel of subject matter experts to explore gaps and opportunities for real-world data (RWD) infrastructure that supports research and clinical trials for Alzheimer’s Disease and Alzheimer’s Disease and Related Dementias (AD/ADRD). This report provides a detailed account of the workshop, including the five key themes identified by panelists and research gaps and opportunities within each theme.
Reducing the Impact of Dementia in America; A Decadal Survey of the Behavioral and Social Sciences, a report by National Academies of Sciences, Engineering, and Medicine sponsored by US Department of Health and Human Services
Reducing the Impact of Dementia in America assesses the contribution of research in the social and behavioral sciences and identifies a research agenda for the coming decade and recommends ways in which they can be pursued in a coordinated manner to improve the reduce the impact of dementia on individuals, families, and society.
National Research Summit on Care, Services, and Supports for Persons Living with Dementia (PLWD) and Their Caregivers, sponsored by National Institute on Aging
The 2020 National Research Summit on Care, Services, and Supports for Persons Living with Dementia (PLWD) and Their Caregivers brought together individuals with a variety of backgrounds to identify evidence-based programs, strategies, approaches, and other research that can be used to improve the care, services, and supports of people living Alzheimer’s disease and Alzheimer’s disease-related dementias. The resulting list of research gaps and opportunities provide a blueprint for future research.
The Hidden Financial Dimensions of Cognitive Decline and Caregiving, sponsored by Bank of America
“The Hidden Financial Dimensions of Cognitive Decline and Caregiving” — the fourth report in a series developed by The Gerontological Society of America and supported by Bank of America — differentiates Alzheimer’s disease from cognitive decline and other types of dementia, documents the direct and indirect costs of ADRD on affected individuals and those providing largely unpaid care to them, and describes benefits of interventions at the individual, family, community, institutional and organizational, and policy levels. The literature on age- and disease-related cognitive decline is reviewed through the lens of the socio-ecological model (individual, interpersonal, organizational, community, and public policy levels).
Designing Data Platforms for Action and Influence, a joint project of USC Sol Price School of Policy and USC Annenberg School for Communication and Journalism
This report identifies a set of best practices and features that enable data platforms to inform policy and practice to catalyze action towards health equity.
Michigan Center on the Demography of Aging (MiCDA)
NIH Professional Judgement Budget for Alzheimer’s Disease and Related Dementias Research, Fiscal Year 2024, NIH presents opportunities to accelerate Alzheimer’s and Related Dementias research, including innovations in prevention, treatment, and care research.
Podcasts
Lessons in Lifespan Health, a podcast by the USC Leonard Davis School of Gerontology, Center for Lifespan Health
Lessons in Lifespan Health is about the science and scientists improving how we live and age. The podcast is produced by the USC Leonard Davis School’s communication office with support in part from the Ney Center for Healthspan Science. Highlighted:
- October 13, 2021: Assistant Professor Joseph Saenz: Understanding Lifespan Influences On Cognitive Ability
- September 1, 2021: Assistant Professor Andrei Irimia: Mapping brain connections and understanding the relationship between concussions and Alzheimer’s disease
- April 26, 2021: Associate Professor Julie Zissimopoulos: the impact and economics of Alzheimer’s
- February 25, 2021: Dr. Hussein Yassine: Uncovering links between nutrition, genes, and risk for Alzheimer’s disease
- November 5, 2019: Professor Mara Mather: Slowing down the progression of Alzheimer’s disease
- June 19, 2019: Professor Christian Pike: Sex differences in Alzheimer’s disease
Minding Memory – CAPRA’s podcast discusses topics related to dementia research, starting with what is dementia? Co-hosted by Matthew Davis and Donovan Maust, Associate Professors and health services researchers at the University of Michigan.