O5‐03‐04: the Lewy Body Dementia Association Research Centers of Excellence Program: Toward Optimizing Clinical Care and Clinical Trial Infrastructure
Year: 2018
Type: article
Abstract: The Lewy Body Dementias (LBD), which include dementia with Lewy bodies (DLB) and Parkinson's disease with dementia (PDD), represent the second most common dementia syndrome after Alzheimer's disease dementia. There are several challenges associated with LBD, which include the lack of approved medications for most clinical features, lack of evidence on management principles, and absence of infrastructure for LBD clinical trials. The Lewy Body Dementia Association (LBDA) oversaw the development of the Research Centers of Excellence (RCOE) program with the primary goals of 1) improving LBD clinical care and 2) developing a clinical trials-ready network and the associated infrastructure. A nation-wide request for applications and review process was performed in 2017, and the inaugural investigator meeting was held in December 2017. Twenty-four centers were selected, and over 40 individuals participated in the investigator meeting. A survey revealed that over 1700 new and over 4800 established LBD patients are evaluated each year across the RCOE centers. The following items were identified as key objectives relating to improving clinical care: 1) identify the optimal tools for clinical diagnosis, 2) define the standards of care for management throughout the course of the disorder, 3) promote continuing medical education to health care providers, and 4) operate and maintain LBD-specific resources, support groups and programs. The key objectives relating to developing clinical trial network infrastructure include: 1) review the landscape of clinical measures and biomarkers pertinent to LBD trial methodology, 2) determine the optimal core and supplemental battery of measures for clinical trials, and develop new measures when needed, 3) expand relationships with industry partners, and 4) determine core principles for LBD trials. Several working groups and committees were established to address these objectives. These objectives address many of the priorities for LBD which were developed at the NAPA Alzheimer's Disease and Related Dementias Summit in 2016 (Corriveau et al, Neurology 2017;89:2381-2391) – particularly the highest priority goal of initiating more clinical trials in LBD. The LBDA RCOE investigators will update the scientific community as these objectives are addressed. Supported by the LBDA.
Source: Alzheimer s & Dementia
Authors: Bradley F. Boeve, Melissa Armstrong, James E. Galvin, Jennifer Goldman, David J. Irwin, Daniel Kaufer, James B. Leverenz, Angela M. Lunde, Ian G. McKeith, Henry L. Paulson, Andrew D. Siderowf, Matthew J. Barrett, Domoto-Reilly Kimiko, John Duda, Doug R. Galasko, Stephen Gomperts, Neill R. Graff-Radford, Samantha K. Holden, Lawrence S. Honig, Daniel Huddleston, Carol Lippa, Irene Litvan, Carol A. Manning, Karen Marder, Charbel E-H Moussa, Chiadi U. Onyike, Fernando Pagan, Alex Pantelyat, Victoria S. Pelak, Kathleen Poston, Joseph F. Quinn, Irene Richard, Liana Rosenthal, Marwan N. Sabbagh, Douglas W. Scharre, Sharon Sha, Holly Shill, Yasar Torres-Yaghi, Katherine Amodeo, Tina Christie, Todd Graham, Mike Koehler, Bethany Peterson, Ian Richard, Angela Taylor
Institutions: Mayo Clinic, University of Florida, Florida Atlantic University, Rush University, University of Pennsylvania, University of North Carolina at Chapel Hill, Cleveland Clinic, Newcastle University, University of Michigan, University of Virginia, University of Washington, VA San Diego Healthcare System, Massachusetts General Hospital, Mayo Clinic in Florida, University of Colorado Anschutz, Columbia University Irving Medical Center, Emory University, Thomas Jefferson University, University of California San Diego, Columbia University, Georgetown University, Johns Hopkins University, Stanford University, Oregon Health & Science University, Lewy Body Dementia Association, University of Rochester, Barrow Neurological Institute, The Ohio State University, George Washington University
Language: English
Subfield: Neurology
Field: Medicine
Domain: Health Sciences
Open Access status: bronze
OpenAlex ID: W2897294763