Center to Accelerate Population Research in Alzheimer's (CAPRA)
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Abstract (Overall) Project Abstract (Overall) The landscape for population impact of Alzheimer’s Disease and related dementias (AD/ADRD) has fundamentally changed over the past decade. Investments in research made through the National Alzheimer’s Project Act (NAPA) in 2011 have unlocked new possibilities for diagnosis and treatment. The investments have also broadened our understanding of AD/ADRD as a global population challenge, revealed the disproportionate burden of disease across population subgroups, and the financial risks to individuals, families, and governments. NAPA’s goal is to reduce the burden of AD/ADRD, not just for persons with dementia, but also for society at large, including the social, economic, and health system effects. While new disease-specific treatments may fundamentally alter the potential for reducing the impact of AD/ADRD on the population, there remain large gaps in our knowledge about how governments and healthcare organizations can best prepare for and respond to the broad population effects of AD/ADRD. The Center to Accelerate Population Research in Alzheimer’s (CAPRA) at the University of Michigan, initially funded in 2019, supports science that informs government and healthcare organization actions to address the negative impacts of dementia on the health and financial well-being of individuals and the population. Our focus on publicly funded programs and healthcare for persons with dementia falls into four inter-related themes; 1) healthcare system design impact on acute and long-term care outcomes, 2) diffusion of new diagnostics and drugs into practice, 3) heterogeneity in disease risk, care access, and outcomes across populations, and 4) innovative applications of population data. The overarching goal for CAPRA is to serve as a national resource to enable and expand high quality research by future leaders in the study of healthcare delivery, economics, and public health to reduce the burden of AD/ADRD locally, nationally, and internationally. With many more people funded in AD/ADRD, in this renewal application CAPRA will strive to be a driving force behind investigators who develop rigorous and impactful AD/ADRD research across the multiple disciplines necessary to address the complexity posed by AD/ADRD and the greater risks across population subgroups. To drive this research CAPRA will: identify and support new investigators; create collaborative networks of scientists across institutions and disciplines; study dementia trends and develop new methods and data resources that are costly and time-consuming to develop on one’s own; and, most importantly, disseminate the tools and the research insights generated by the CAPRA community of scientists broadly.
PROJECT ABSTRACT (Administrative Core) The goal of the Center to Accelerate Population Research in Alzheimer’s (CAPRA) is to serve as a national resource to promote and accelerate observational studies that aim to inform government and healthcare system actions to reduce the social, economic, and health burden of AD/ADRD. The objective of the Administrative Core is to provide a strong foundation for CAPRA. The design of CAPRA is motivated by a perceived need in Alzheimer’s population research, despite increased funding, for greater assistance for early investigators and those newer to AD/ADRD research. This need for assistance is due to a limited pool of expertise and the need for resources, data and methods that are costly and time-consuming to develop on one’s own. The strategic vision of the CAPRA leadership team is to lower these barriers by leveraging the deep expertise at the University of Michigan (UM) to enable new and established investigators locally and nationally to initiate novel areas of AD/ADRD population research by supporting pilot studies and training, engaging scientific networks, and providing research tools and data for use of population data. CAPRA’s structure and governance will include five Cores [Administrative; Program (Pilot); Communication and Dissemination; External Networks; and External Research Resources], a Steering Committee and an External Advisory Board, all composed of investigators across disciplines and areas of expertise that will generate the multitude of ideas necessary to address the complex challenges posed by AD/ADRD; the CAPRA leadership team draws from the UM Schools of Public Health, Medicine and Nursing. The CAPRA Administrative Core will serve several functions: it will manage, communicate, and integrate activities across Cores and conduct all financial and regulatory grant operations for the Center; Provide project management to enable successful and timely implementation of each Core’s activities; and Lead continuous evaluation and improvement of the Center by tracking attainment of milestones with each Core, collecting regular feedback from CAPRA participants and reporting to the Coordinating Center and NIA. CAPRA’s success depends on the infrastructure, organization and management provided by the Administrative Core. The CAPRA Administrative Core has performed well in establishing a new center and in this next phase will continue to provide the efficient, highquality management necessary to advance our goals for population and healthcare research in AD/ADRD.
PROJECT ABSTRACT (Communication & Dissemination Core) The overarching goal for CAPRA is to serve as a national resource to promote and accelerate studies that aim to reduce the social, economic, and health burden of AD/ADRD on the population. To achieve this goal, CAPRA must conduct outreach and communicate with investigators who can benefit from its resources, the scientific community whose own research will be informed by the results of CAPRA-funded studies, the healthcare system, public service and governmental leaders whose work our studies inform, and importantly the communities and individuals whom this research is meant to benefit. Reaching these audiences requires the use of multiple approaches and channels to achieve a successful connection. The objective of the Communication & Dissemination Core is to provide the infrastructure, staff and faculty effort, and connections across the multitude of institutional resources, external partners, NIA centers, and other outlets necessary for outreach. We will use contemporary technology for wide dissemination of our key CAPRA activities including availability of pilot funding, opportunities to learn about observational AD/ADRD research and access data and methods, and the scientific insights made by CAPRA, its pilot awardees and affiliates to the broader community. Our website will host training seminars, information about our awardees, and research materials and will disseminate the CAPRA Quarterly newsletter. Our podcast series (Minding Memory) will continue to feature interviews of AD/ADRD researchers, highlight emerging topics, and new high-impact publications. We will also coordinate implementation of strong Data Management and Sharing (DMS) plans for our Pilot Awardees and External Research Resources Core to enhance transparency and reproducibility of CAPRA-sponsored research. In collaboration with the Pilot and External Research Resources Cores, we will ensure all CAPRA investigators are trained in DMS bestpractices and will facilitate and track public accessibility of products in accordance with DMS plans. With excellent documentation and discoverable materials, the research methods will be available for use by other investigators, analysts, or other consumers of population AD/ADRD research. And lastly, we will broaden the reach and impact of CAPRA by disseminating our programs and products to the scientific community, state and federal governments, and other stakeholders for the purpose of stimulating collaborations and sharing of new knowledge that can be translated into action. The Communication and Dissemination Core’s impact will be to broadly disseminate research insights, methods, and data products generated by CAPRA-funded activities to relevant stakeholders: governmental programs, health organizations, communities and the lay public.
PROJECT ABSTRACT (External Network Core) The External Network Core of the Center to Accelerate Population Research in Alzheimer’s (CAPRA) aims to create and sustain opportunities for multidisciplinary collaboration and interaction by developing networks of scientists across disciplines, academic stage, and institutions focused on high-priority topics in healthcare research related to AD/ADRD. These networks create opportunities for scientists to critique and learn from each other’s research and to build multidisciplinary collaborations that are synergistic across research groups, strengthen the rigor of research, and accelerate the development of new knowledge. The External Network Core is key to CAPRA’s overarching strategy to drive rigorous and impactful AD/ADRD research because it focuses on engaging investigators from different institutions to encourage crossfertilization, generation of new ideas, and shared learning on how to advance rigorously designed new research. We plan to support three External Networks at differing stages of development. (1) Financial and Economic Decision-making in AD/ADRD for Individuals and Populations. In the prior funding period, CAPRA, in collaboration with the National Bureau of Economic Research (NBER), successfully launched this network which includes an annual, in-person scientific meeting which we now plan to expand by opening access to the scientific meeting broadly. (2) Long-term Care and AD/ADRD. We also launched the Long-Term Care (LTC) network in collaboration with the Gateway to Global Aging Data, based at the University of Southern California. The LTC network holds monthly research seminars engaging international and U.S. investigators. CAPRA has brought the U.S. perspective to this international scientific network. To further the growth of long-term care research in the U.S., we plan to add activities that engage more U.S. investigators, especially early stage, to build capacity in this priority area of research at a time when new data resources are becoming available. (3) Diffusion of New Diagnostics and Drugs in AD. We will launch this network to address healthcare delivery and ethical challenges that accompany new disease-modifying drugs and easily obtained blood-based biomarkers for AD in partnership with the NSF-funded UM Center for Data Discovery and Treatment Assessment which engages informaticists and industry partners. Each network will use in-person meetings and at-distance videoconferencing collaboration strategies as appropriate for the network’s stage of development. The External Network Core impact will be to advance science related to demography, economics and health services research in AD/ADRD by giving investigators, both expert and newly joining the field, the benefits of sharing their expertise, and opportunities for collaboration and cross-fertilization that stimulate novel and impactful future studies.
