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Support the development of AD/ADRD data and clinical infrastructure and harmonization processes that allow for the integration of health care, formal and informal caregiving, and other care-related data from multiple sources (e.g., EHR, claims, surveys, patient-reported outcomes) to facilitate research on diverse populations of persons living with AD/ADRD in order to improve dementia care outcomes as well as recruitment and retention for clinical trials.
2030 RFA-AG-23-022 (R01): Measures and Methods for Research on Family Caregivers for People Living with Alzheimer’s Disease and Related Dementias (AD/ADRD) RFA-AG-23-023 (R21): Measures and Methods for Research on Family Caregivers for People Living with Alzheimer’s Disease and Related Dementias (AD/ADRD) RFA-AG-25-001: Deriving Common Data Elements from Real-World Data for Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (U24 Clinical Trial Not Allowed) 13.Q In Progress Support the development of AD/ADRD data and clinical infrastructure and harmonization processes that allow for the integration of health care, formal and informal caregiving, and other care-related data. DN 2020 Dementia Care Summit Int.2, 4.4, 6.1, 6.2, 6.5 Relevant 2023 Dementia Care Summit G&Os: 4.1 Workshop: Gaps and Opportunities for Real-World Data: Stakeholder Workshop Research on Care and Caregiver Support Workshop: Breaking Data Barriers and Scaling Behavior Change Interventions to Benefit Older Adult Health through Public-Private Partnerships Contract for linking Medicare and Medicaid data to NIA funded study https://www.nia.nih.gov/research/blog/2022/02/streamlined-secure-access-cms-study-data and https://www.medric.info/ Availability of EHR claims data from nursing homes: Using data to improve nursing home clinical care | National Institute on Aging (nih.gov) Gaps and Opportunities for Real-World Data: Stakeholder Workshop May 2022 https://www.nia.nih.gov/gaps-opportunities-stakeholder-workshop
- Establish at least one public private partnership to develop AD/ADRD data infrastructure focused on health care, formal and informal caregiving, and other care-related topics to enable analyses of care disparities among diverse populations, make such infrastructure resources available to the research community, and incentivize its use.
- Ensure that the data infrastructure developed facilitates the investigation of social determinants of health and increases representation of vulnerable and underrepresented populations to enable examination of disparities in dementia care access, use, and quality.
Summary of Key Accomplishments
NIA supported two workshops focused on data infrastructure needs for to advance aging research, including for those living with dementia. In April 2021, experts at the Breaking Data Barriers and Scaling Behavior Change Interventions to Benefit Older Adult Health through Public-Private Partnerships workshop discussed opportunities to leverage big data to address health disparities and inform clinical interventions. In May 2022, participants at the Gaps and Opportunities for Real-World Data Stakeholder Workshop provided an overview of data infrastructure needs and discussed the potential for real-world data to improve clinical trials recruitment and related topics. Recently, NIA and the Centers for Medicare and Medicaid Services (CMS) entered into a new Information Exchange Agreement (IEA), which enables NIA funded studies to link CMS claims data. This streamlined access to CMS data linked to NIA funded study data provides a valuable resource for scientists conducting aging, health care, and health outcomes research, including for persons living with dementia.
The key accomplishments summary is current as of July 2022.