Dementia with Lewy Bodies: Filling the Gaps in Translational and Clinical Research

Audience

Researchers and general public interested in learning about gaps in clinical and translational research of Dementia with Lewy Bodies are invited to join this workshop.

Watch The Recordings

Day 1


Day 2

Purpose and Background

The NIA and National Institute of Neurological Disorders and Stroke (NINDS) sponsored workshop aimed to expand the knowledge base in medical and associated sciences by bringing interdisciplinary researchers to discuss Filling the Gaps in Translational and Clinical Research of Dementia with Lewy Bodies (DLB). DLB is a complex and challenging brain disorder. DLB is characterized by the presence of Lewy bodies in the brain and cognitive decline that worsens over time. DLB also affects other parts of the body. Because DLB is characterized by a group of symptoms that overlap with other disorders, particularly dementias, and parkinsonism, it is very often misdiagnosed or not diagnosed. Recent encouraging developments in measuring alpha-synuclein (e.g., seeding assays, PET ligands) suggest that the time may be ripe for re-evaluating DLB characterization, similar to how Alzheimer’s disease has recently been redefined to specify the biological processes. Existing efforts to create disease profiles based on clinical symptoms and biomarkers in other disorders can be leveraged to improve and increase recognition of DLB. This workshop broadly supports the goals of the National Plan for Alzheimer’s Disease and Related Dementias in response to the National Alzheimer's Project Act (NAPA), to build upon and leverage HHS programs and other federal efforts to help change the trajectory of Alzheimer's disease and related dementias (AD/ADRD).

Agenda

All times are in Eastern Daylight Time.

Day 1 | Tuesday, Nov. 12, 2024

8:45 a.m. Opening Remarks

  • Amy S. Kelley, M.D., M.S.H.S., National Institute on Aging
  • Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke

9:00 a.m. Personal Experience with DLB Diagnosis
Moderator: Melissa J. Armstrong, M.D., M.Sc., University of Florida

  • Angela S. Taylor, Lewy Body Dementia Association
  • Tish Hevel, The Brain Donor Project
  • Sandra Moose, Lewy Body Research Foundation
  • Daniel A. Drubach, M.D.
  • Jack Faraci, M.D., and Juan Bujosa
  • Graham Williams and Coleen Williams

10:30 a.m. Clinical features: Distinct and Overlapping
Moderator: James E. Galvin, M.D., M.P.H., University of Miami Miller School of Medicine

  • Current Clinical Diagnostic Criteria for DLB and PDD: commonalities, differences, and opportunities, John-Paul Taylor, Ph.D., Newcastle University U.K.
  • Sleep Disorders in DLB, Bradley F. Boeve, M.D., Mayo Clinic
  • Psychiatric Symptoms in DLB: From Early to Late Disease, Daniel Weintraub M.D., University of Pennsylvania School of Medicine and Philadelphia Veterans Affairs Medical Center
  • Motor Aspects of DLB, Jennifer G. Goldman, M.D., M.S., JPG Enterprises LLC and Barrow Neurological Institute
  • Cognitive Aspects of DLB, Tanis J. Ferman Ph.D., Mayo Clinic

12:55 p.m. Break

2:00 p.m. Data Blitz

  • Network proteomics of the Lewy body dementia brain reveals presynaptic signatures distinct from Alzheimer's disease, Lenora Higginbotham, M.D., Emory University School of Medicine
  • Exploring the use of implanted subgaleal leads for long-term cortical physiomarker tracking during deep brain stimulation for Parkinson's disease, Stephanie Sandoval-Pistorius, M.S., Ph.D., University of California San Francisco
  • From Gut to Brain: Exploring Microbiome Links in Dementia with Lewy Bodies, Bernard Fongang, Ph.D., UT Health San Antonio
  • Sex differences in Lewy body dementia, Ece Bayram, M.D., Ph.D., University of Colorado
  • Where does alpha-synuclein matter for dementia? Evaluating vulnerable circuits from humans to rodents, Georgina Aldridge, M.D., Ph.D., University of Iowa

2:50 p.m. Neuropathological Features: Distinct and Overlapping

  • Advanced microscopy and machine learning approaches to quantify neuropathologic burden, Melissa E. Murray, Ph.D., Mayo Clinic Jacksonville
  • DLB: Neuropathological criteria and co-pathologies, Johannes Attems, M.D., Translational and Clinical Research Institute, Newcastle University, Newcastle upon Tyne, UK
  • Integrated Proteomics for Biomarker Discovery in Alzheimer’s Disease and Lewy Body Dementia, Nick Seyfried, Ph.D., Emory University School of Medicine
  • Genomic advances in Lewy body dementia, Sonja Scholz, M.D., Ph.D., National Institute of Neurological Disorders and Stroke
  • How well do cell culture models reflect Lewy pathology?, Pam J. McLean, Ph.D., Mayo Clinic Jacksonville

4:30 p.m. Break

4:45 p.m. Discussion on Neuropathological Features: Distinct and Overlapping
Moderator: Jim Leverenz, M.D., Cleveland Clinic

5:30 p.m. Adjourn

Day 2 | Wednesday, Nov. 13, 2024

8:30 a.m. Associated Biomarkers
Moderator: Alice Chen-Plotkin, M.D., Perelman School of Medicine at the University of Pennsylvania

  • Actigraphy and Sleep-monitoring Devices may help differentiate Dementia with Lewy Bodies from Alzheimer's disease, Debby Tsuang, M.D., M.S., University of Washington/VA Puget Sound
  • Fluid and skin Biomarkers for a-Syn seeding and Alzheimer’s Disease in DLB, Douglas Galasko, M.D., University of California San Diego
  • Evaluating the landscape of co-occurring alpha-synuclein and tau seeding across Lewy body and Alzheimer diseases, Allison Kraus, Ph.D., Case Western Reserve University School of Medicine
  • Imaging biomarkers: Filling the gap for drug development and clinical trials, Kejal Kantarci, M.D., M.S., Mayo Clinic
  • Computational Chemistry Methods in the Development of Alpha Synuclein and 4R Tau PET Radiotracers, Robert H. Mach, Ph.D., Perelman School of Medicine at the University of Pennsylvania
  • PET and DaT in Lewy Body disease, Elizabeth Mormino, Ph.D., Stanford University

11:30 a.m. Break

12:30 p.m. Clinical trials in Dementia with Lewy Bodies
Moderator: Rachelle Doody, M.D., Ph.D.

  • Clinical Trials in DLB: Where We Were and Where We Are Going, James E. Galvin, M.D., M.P.H., University of Miami Miller School of Medicine
  • NIA AD/ADRD Clinical Trial Resources and Initiatives, Laurie Ryan, Ph.D., National Institute on Aging
  • Lewy Body Centers of Excellence, Bradley F. Boeve, M.D., Mayo Clinic

1:50 p.m. Break

2:05 p.m. Drug Development
Moderator: Amir Tamiz, Ph.D., National Institute of Neurological Disorders and Stroke

  • Design issues in trials for Dementia with Lewy Bodies: what can we learn from other neurodegenerative diseases?, Rachelle Doody, M.D., Ph.D.
  • One drug, dual effect: buntanetap improves cognitive and motor functions, benefitting Alzheimer's and Parkinson's patients. Potential Path for Lewy Body Dementia?, Maria Maccecchini, Ph.D., Annovis Bio, Inc.
  • Bridging the gap: A pharmaceutical perspective on DLB treatment, Pablo Sardi, Pharm.D., Ph.D., Sanofi
  • Translational learnings from the AscenD-LB phase 2a clinical trial of neflamapimod in patients with DLB, John J. Alam, M.D., CervoMed, Inc.

3:25 p.m. Gaps and Opportunities and Summary of Next Steps: Data and sample existing resources and future needs
Moderator: Debra Babcock M.D., Ph.D., National Institute of Neurological Disorders and Stroke

  • The National Azheimer’s Coordinating Center (NACC) Data Platform, Sarah Biber, Ph.D., University of Washington
  • National Centralized Repository for Alzheimer's Disease and Related Dementia (NCRAD) and Biospecimen Exchange for Neurological Disorders (BioSEND), Tatiana Foroud, Ph.D., Indiana University School of Medicine
  • The AD Knowledge Portal: Enabling Data Infrastructure for ADRD Research, Laura Heath, Ph.D., Sage Bionetworks

4:30 p.m. Adjourn

Additional Information

Learn more about Lewy Body Dementia.

Contact Information

Please contact Dr. Nina Silverberg at silverbergn@mail.nih.gov or Grayson Donley at grayson.donley@nih.gov with any questions regarding the workshop.