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AD-Related Dementias Focus
Conduct research to improve pre- and post-data collection harmonization and sharing practices across multiple etiology cognitive impairment and dementia studies.
2032 RFA-NS-22-006: Leveraging Existing Data Resources for Computational Model and Tool Development to Discover Novel Candidate Mechanisms and Biomarkers for ADRD (R01 Clinical Trial Not Allowed) RFA-NS-22-062: Connecting Machine Readable Digital Human AD/ADRD Neuropathological Library Platforms for Advanced Analytics (U24 Clinical Trial Not Allowed) RFA-NS-23-002: Tools and resources to understand the vascular pathophysiology of in vivo neuroimaging findings in TBI-related dementia and/or VCID (U24 - Clinical Trials Not Allowed) 3.I In Progress Best practices for ADRD research data sharing DN 2022 ADRD Summit: Multiple Etiology Dementias (MED) Milestone 8, Priority 3 Blog: Be prepared for data management and sharing requirements using common data elements Data Sharing and Reproducibility Projects funded in FY22
- One initiative to develop and promote incorporation of common data elements (CDEs) and best practices for standardized consent language to facilitate research, including by data and biologicals sharing, that addresses real world cognitive impairment and dementia in diverse populations of the United States.
Summary of Key Accomplishments
In 2022, NINDS launched three initiatives to promote data collection harmonization or to improve data sharing.
Leveraging Existing Data Resources for Computational Model and Tool Development to Discover Novel Candidate Mechanisms and Biomarkers for ADRD supports six awards that focus on aggregating, harmonizing and integrating existing data sets into shared interactive computational software and models for research analysis and dissemination. At the preclinical level, these platforms could provide a tool to develop novel hypotheses that generally would not be apparent without the aggregation of disconnected data sets. At a clinical level, the tools could aggregate distinct datasets to generate disease progression models or clinical trial simulators to inform more efficient clinical trial design.
Connecting Machine Readable Digital Human AD/ADRD Neuropathological Library Platforms for Advanced Analytics supports two studies that are collaborating to: 1) develop an open-source software platform that enables a federated approach using multiple data repository sites with a single access portal to support data sharing and analysis of human digital neuropathological slides and 2) perform software testing for multisite neuropathological analyses. Successful collaboration between these awardees will aid in the development of a centralized and scalable platform that houses high-quality digital images. This platform will also promote collaboration, data sharing, and advance our understanding of post-traumatic neurodegeneration.
Another initiative is developing tools and resources to understand the vascular pathophysiology of in vivo neuroimaging findings in traumatic brain injury-related (TBI) dementia and/or vascular contributions to cognitive impairment and dementia (VCID). Under this initiative, two awards are collaborating to develop improved in-vivo and ex-vivo MRI sequences, as well as neuropathology pipelines and analysis techniques, to bridge the knowledge gaps between these fields. Successful collaborations between awardees will ultimately result in 1) broadly usable tools and resources that will significantly increase our knowledge of the vascular pathophysiology and clinical presentation of TBI and VCID and 2) improved in-vivo diagnosis and prognosis of TBI and VCID patients, with the potential for improved treatment strategies and/or therapeutics.
The key accomplishments summary is current as of September 2025.