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Convene a meeting that brings together epidemiologists, clinical trialists, clinical practitioners, representatives from industry and patient advocates from diverse communities to formulate guidelines for defining clinically significant outcomes and methods for comprehensive analysis and interpretation of trial data.
2030 10.A In Progress Convene a meeting that brings together epidemiologists, clinical trialists, clinical practitioners, representatives from industry and patient advocates from diverse communities to formulate guidelines... DN 2015 AD Summit: 3K 2017 Dementia Care Summit Workshop: Committee on Developing a Behavioral and Social Science Research Agenda on AD/ADRD (Second workshop, held October 2019) Workshop: Improving Measurement and Data Quality in AD/ADRD Research Workshop: Clinically Meaningful Outcomes in AD/ADRD Trials Trial Design Decadal Survey of Behavioral and Social Science Research on Alzheimer’s Disease and Alzheimer’s Disease-Related Dementias Examples of funded projects
- Develop guidelines for defining clinically significant outcomes and methods for comprehensive analysis and interpretation of trial data.
- Fund research to advance methods for measuring person-centered outcomes, to include outcomes that matter to persons with dementia and caregivers, including through self-report measures across the disease severity spectrum and care settings.
Summary of Key Accomplishments
The NIA-funded NASEM Decadal Survey of Behavioral and Social Science Research on AD/ADRD and the 2017 and 2020 National Research Summits on Care, Services and Supports for PLWD and their Caregivers all included discussions of the importance of incorporating patient-reported outcomes that matter in clinical research. NIA has funded a number of projects that aim to advance methods for measuring person-centered outcomes. For example, NIA awarded an interdisciplinary network award called Leveraging an Interdisciplinary Consortium to Improve Care and Outcomes for PLWD (LINC-AD) that convenes experts to examine, develop, and disseminate methods for measuring person-centered outcomes and care tools for PLWD and care partners that will enable future research and intervention development to better reflect the perspectives and needs of PLWD and their care partners.
The key accomplishments summary is current as of July 2022.