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Lewy body dementia: Overcoming barriers and identifying solutions.

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Agarwal, Kanishka 
Backler, Wendi 
Bayram, Ece 
Bloom, Leah 
Boeve, Bradley F 


Despite its high prevalence among dementias, Lewy body dementia (LBD) remains poorly understood with a limited, albeit growing, evidence base. The public-health burden that LBD imposes is worsened by overlapping pathologies, which contribute to misdiagnosis, and lack of treatments. For this report, we gathered and analyzed public-domain information on advocacy, funding, research outputs, and the therapeutic pipeline to identify gaps in each of these key elements. To further understand the current gaps, we also conducted interviews with leading experts in regulatory/governmental agencies, LBD advocacy, academic research, and biopharmaceutical research, as well as with funding sources. We identified wide gaps across the entire landscape, the most critical being in research. Many of the experts participated in a workshop to discuss the prioritization of research areas with a view to accelerating therapeutic development and improving patient care. This white paper outlines the opportunities for bridging the major LBD gaps and creates the framework for collaboration in that endeavor. HIGHLIGHTS: A group representing academia, government, industry, and consulting expertise was convened to discuss current progress in Dementia with Lewy Body care and research. Consideration of expert opinion,natural language processing of the literature as well as publicly available data bases, and Delphi inspired discussion led to a proposed consensus document of priorities for the field.


Publication status: Published

Funder: Lewy Body Dementia Association; doi:

Funder: National Institute for Health Research for the Newcastle (NIHR) Biomedical Research Centre

Funder: Mayo Clinic Dorothy and Harry T. Mangurian Jr. Lewy Body Dementia Program

Funder: Little Family Foundation; doi:

Funder: Ted Turner and Family LBD Functional Genomics ConProgram

Funder: American Brain Foundation; doi:

Funder: Douglas Herthel DVM Memorial Fund

Funder: GE Healthcare; doi:


Lewy body dementia, funding sources, natural language processing, research trends, Humans, Lewy Body Disease

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Alzheimers Dement

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National Institute on Aging (K99AG073453, U19AG071754, U01NS100620, P30AG062677)
NIH (P30AG062677, U01NS100620, U19AG071754, U01NS100610, U01AG0733, P30AG072959, ZIANS003154)
National Institute of Neurological Disorders and Stroke (ZIANS003154)