The National Institute on Aging (NIA) recently awarded a $53.5 grant to Brown University and the National Hebrew Senior Home in Boston to develop and coordinate studies in real-world settings. Called the Imbedded Pragmatic AD/ADRD Clinical Trials (IMPACT) Collaboratory, the funding is to occur over the next five years.
With a focus on Alzheimer’s disease and related dementias (AD/ADRD) IMPACT Collaboratory, researchers will team with researchers at other universities with health care and long-term care systems to guide research to develop and test novel ways to care for people with AD/ADRD.
Crisis with Massive Costs in America
The NIA seeks to meet the challenges of complex care management for people with AD/ADRD and their families. AD/ADRD represents the most expensive health care disease costs in America. Much of these costs are passed on to Medicare and Medicaid. In 2019, it is anticipated that the two health divisions under U.S. Health and Human Services will spend an estimated $195 billion caring for those with AD/ADRD. This represents 67% of the total costs. In Medicare alone, AD/ADRD will account for $146 billion. Public expenditure for the average senior with AD/ADRD will be 3 times higher than others. Under Medicaid, the AD/ADRD is 23 times higher!
Moreover, the NIA expresses that studies reveal a lack of continuity in dementia care correlates with higher rates of hospitalization, emergency department visits, testing, and health care spending not to mention premature institutionalization and complicated, expensive and burdensome transitions in late-life dementia. At present, about 5.6 million Americans age 65 and up live with Alzheimer’s dementia. Most of them are cared for at home by family members.
IMPACT Must Pave the Way to Better Care Coordination & Results
With a problem costing nearly $200 billion, the latest research budget is a start if those monies are put to work creatively, intelligently and carefully. The IMPACT Collaboratory is modeled on the NIH’s Health Care Systems Research Collaboratory, which involves partnering with health care systems to conduct large-scale clinical studies and hence from one perspective is part of the clinical research as a care option wave.
Richard J. Hodes, MD, and Director of the NIA stated in the press release “There is a pressing need to improve care and support people with dementia and their caregivers.” Dr. Hodes continued “The IMPACT Collaboratory will enable more effective, efficient teamwork research on finding better solutions for the millions of Americans affected by these devasting diseases.”
Like the NIH program, the new Collaboratory promotes the development of pragmatic clinical trials conducted in settings such as hospitals, homes, assisted living facilities, adult day centers, and nursing homes, in a quest to “train the next generation of pragmatic trialists.”
Pragmatic Clinical Trials
The new program will also serve as a national resource stimulating clinical trial pilots focusing on the improvement of care and health outcomes for those with AD/ADRD. A key hypothesis for the underlying grant rests the assumption that the testing of AD/ADRD care improvements in everyday settings facilitates and promotes broader participation of diverse participants while strengthening not only the real-world applicability but also the implementation of new care approaches.
This program doesn’t fund necessarily traditional clinical trials—those that are organized and conducted in tightly controlled conditions and settings—but rather focuses on pragmatic trials which test interventions in real-life settings including hospitals, health care systems, clinics, and senior centers for examples. Pragmatic trials use relatively simple study designs without sacrificing scientific rigor.
John Haaga, PhD., Director of the Division of Behavioral and Social Research at NIA notes “There is a need for studies conducted in realistic settings that can provide evidence for system-wide benefits.” Haag continued “ This award is designed to develop a research infrastructure that encourages pragmatic trials of innovative dementia care, develops best practices for conducting these types of trials, and shares knowledge among researchers and health systems, with the overall goal of improving care for people with dementia and their caregivers.”
Vincent Mor, Co-leader of the Collaboration and a Professor of Health Services, Policy, and Practice, Brown University School of Public Health.
Call to Action: Are you interested in getting involved? Do you have a loved one diagnosed with AD/ADRD? Review the IMPACT Collaboratory website for more details. They can be reached at ImpactCollaboratory@hsl.harvard.edu. Do you need support finding the right contacts—feel free to either contact TrialSite News or sign up for the newsletter.