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Public Private Partnerships: Consensus nomenclature (Milestone 14.F)

In Progress

Timeline Start - End

2020 - 2025

Research Implementation Area

Public Private Partnerships

Update consensus on AD/ADRD nomenclature necessary to identify target populations for intervention research; clarify role of symptom presentation and presence of biomarkers in new nomenclature. Determine impact on patient/clinician communication about dementia diagnosis and management. Determine impact on public understanding about dementia.

Success Criteria

  • Completed consensus document reflecting research and clinician views on incorporating symptom and biomarker information.

  • Conduct research in populations with varying educational, cultural, income and racial/ethnic backgrounds.

Summary of Key Accomplishments

An interagency Dementia Nomenclature workgroup has been established to facilitate cross-cutting stakeholder discussion on barriers, opportunities, and strategies to develop consistent, accurate, and meaningful language for cognitive impairment and dementia that is useable or at minimum interoperable among scientists, care providers and the public. The workgroup is comprised of non-federal and federal members, with NIH represented by NIA and NINDS. The workgroup held two workshops in 2021 to share their findings with NIH and other researchers and stakeholders.

The key accomplishments summary is current as of March 2022. 

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