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Advisory Council January 2021 Meeting Presentation: Nomenclature

Monday, January 25, 2021

Printer Friendly Version in PDF Format (9 PDF pages)

 

Nomenclature

Ronald C. Petersen, PhD, MD
Mayo Clinic
Rochester, MN

Angela Taylor
Lewy Body Dementia Association

Nomenclature Initiative

  • Progress on initiative
  • Asymptomatic people with biomarkers

Nomenclature Initiative

  • Progress on initiative
  • Asymptomatic people with biomarkers

Nomenclature -- Words Matter

  • Nomenclature issues very important
  • Cut across all spheres of investigation
    • Science/Research
    • Clinical Care
    • Public Stakeholders
      • Government agencies
      • Advocacy groups
      • Research participants
      • Under-represented groups

Confusion in the field on terminology

  • Alzheimer's Disease
  • Frontotemporal Degeneration
  • Dementia with Lewy Bodies
  • Vascular cognitive impairment-dementia
  • Mixed dementias

Working Groups

  • Research: Sandy Weintraub, PhD, NW University
  • Clinical: Marwan Sabbagh, MD, Cleveland Clinic, Las Vegas
  • Public Stakeholders: Jason Karlawish, MD, U of Pennsylvania
  • Facilitator: RAND Corporation

Nomenclature -- Implications for Research

  • Science/Research: Must be precise
  • Clinicians: Must translate science to patients and vice versa
  • Public stakeholders: Stigma, willingness to participate in research
    • Sensitivity in under-represented groups

NOMENCLATURE FRAMEWORK

  • Level 1: Umbrella term for neurological disorders causing cognitive impairment and dementia
    • Each Working Group recommends an umbrella term
  • Level 2: Age of onset; e.g.,
    • Over/under 60
    • Mid-life, late-life, oldest old
    • Young onset, late onset
  • Level 3: Continuum of cognitive impairment from none to severe (aka dementia); e.g.,
    • None, slight, mild, moderate severe
    • Stage 0-5
    • None, MCI, mild, moderate, severe dementia
    • mid/major neurocognitive disorder
  • Level 4: Syndromic description
    • Descriptive, with cognitive and behavioral domains; underlying etiology not specified. May include adjectives (memory, language, executive, behavioral) and noun (disorder, spectrum, continuum) or combinations
  • Level 5: Neuropathologies; e.g.,
    • amyloid
    • tau
    • alpha synuclein
    • TDP-43
    • vascular

Nomenclature Initiative

  • Progress on initiative
  • Asymptomatic people with biomarkers

Old Conception of Alzheimer's Disease

Listen to the Part 2 video for description of this graph.

NINCDS-ADRDA Criteria 1984

Screen shot of the paper Clinical diagnosis of Alzheimer's disease: Report of the NINCDS-ADRDA Work Group under the auspices of Department of Health and Human Services Task Force on Alzheimer's Disease.
https://www.academia.edu/9694791/Clinical_diagnosis_of_Alzheimers_disease_report_of_the_NINCDS_ADRDA_Work_Group_under_the_auspices_of_Department_of_Health_and_Human_Services_Task_Force_on_Alzheimers_Disease

 

Alzheimer's Disease as a Clinical -- Pathological Entity

Alzheimer's Disease

  • 1984 -- NINCDS-ADRDA Criteria
    • Clinical-Pathological definition
  • 2011 -- NIA-AA Criteria
    • Clinical syndrome with biomarkers for amyloid and neurodegeneration
  • 2018 -- NIA-AA Framework
    • Alzheimer's disease as a biological entity defined by positive biomarkers for amyloid and tau
    • Clinical Spectra Independent

SEVERITY

Listen to the Part 2 video for description of this graph.

SEVERITY

Listen to the Part 2 video for description of this graph.

Plans for Future

  • Work groups continue to meet
    • Research/Science
    • Clinical practice
    • Public stakeholders
  • Present research implications to NIH at workshop on February 16, 2021

Dementia Nomenclature Initiative Winter 2021 Workshop

  • Goal: Update NIH and others on dementia nomenclature initiative progress; elicit feedback on working plan.
    1. Challenges of Current Nomenclature for Research, Clinical Care, and Public Communication
    2. Overview of the Dementia Nomenclature Initiative
    3. Report from the Research Working Group
    4. Working Group Updates: Clinical Care and Public Stakeholder
    5. Panel Discussion: Through the Lens of Health Disparities

Thank you

Questions?