Lewy body dementia: Overcoming barriers and identifying solutions

Author:

Agarwal Kanishka1,Backler Wendi1,Bayram Ece2,Bloom Leah3,Boeve Bradley F.4,Cha Jang‐Ho5,Denslow Maria6,Ferman Tanis J.7,Galasko Douglas8,Galvin James E.9,Gomperts Stephen N.10,Irizarry Michael C.6,Kantarci Kejal11,Kaushik Harsh1,Kietlinski Matt1,Koenig Aaron12,Leverenz James B.13,McKeith Ian14,McLean Pamela J.15,Montine Thomas J.16,Moose Sandra O.1,O'Brien John T.17,Panier Valery1,Ramanathan Sharad18,Ringel Michael S.1,Scholz Sonja W.1920,Small Jonnell1,Sperling Reisa A.1021,Taylor Angela22,Taylor John‐Paul16,Ward Rebecca A.10ORCID,Witten Lisa1,Hyman Bradley T.10

Affiliation:

1. The Boston Consulting Group Boston Massachusetts USA

2. Parkinson and Other Movement Disorders Center Department of Neurosciences University of California San Diego La Jolla California USA

3. Zag Bio, Inc Cambridge Massachusetts USA

4. Department of Neurology Mayo Clinic Rochester Minnesota USA

5. Latus Bio Cambridge Massachusetts USA

6. Alzheimer Disease and Brain Health Eisai, Inc. Nutley New Jersey USA

7. Department of Psychiatry and Psychology Mayo Clinic Jacksonville Florida USA

8. Department of Neurosciences and Shiley‐Marcos Alzheimer's Disease Research Center UC San Diego La Jolla California USA

9. Department of Neurology Comprehensive Center for Brain Health University of Miami Miller School of Medicine Boca Raton Florida USA

10. Department of Neurology Massachusetts General Hospital Boston Massachusetts USA

11. Department of Radiology Division of Neuroradiology Mayo Clinic Rochester Rochester Minnesota USA

12. Delix Therapeutics Bedford Massachusetts USA

13. Cleveland Lou Ruvo Center for Brain Health Neurological Institute Cleveland Clinic Cleveland Ohio USA

14. Translational and Clinical Research Institute Newcastle University Newcastle upon Tyne UK

15. Department of Neuroscience Mayo Clinic Jacksonville Florida USA

16. Department of Pathology Stanford University Stanford California USA

17. Department of Psychiatry University of Cambridge School of Clinical Medicine Cambridge UK

18. Departments of Molecular and Cell Biology Stem Cell and Regenerative Biology and Applied Physics Harvard University Cambridge Massachusetts USA

19. National Institute of Neurological Disorders and Stroke National Institutes of Health Bethesda Maryland USA

20. Department of Neurology Johns Hopkins University Medical Center Baltimore Maryland USA

21. Department of Neurology Brigham and Women's Hospital and Harvard Medical School Boston Massachusetts USA

22. Lewy Body Dementia Association Lilburn Georgia USA

Abstract

AbstractDespite 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.

Funder

National Institute on Aging

National Institutes of Health

Lewy Body Dementia Association

National Institute of Neurological Disorders and Stroke

Little Family Foundation

American Brain Foundation

GE Healthcare

Publisher

Wiley

Subject

Psychiatry and Mental health,Cellular and Molecular Neuroscience,Geriatrics and Gerontology,Neurology (clinical),Developmental Neuroscience,Health Policy,Epidemiology

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