Lewy body dementia is the second most common type of progressive dementia after Alzheimer’s disease, but it is underdiagnosed, says Bradley Boeve, M.D., a Mayo Clinic neurologist. A new program among research centers across the country intends to change that.
The Lewy Body Dementia Association announced today the launch of the Lewy Body Dementia Association Research Centers of Excellence. This collaboration, coordinated by Mayo Clinic, features 24 academic medical research centers across the U.S. The new program plans to offer coordinated research resources; expanded clinical trial efforts; and expert care for patients, families and caregivers. The Lewy Body Dementia Association is an advocacy group dedicated to raising awareness and advancing research about Lewy body dementia.
In Lewy body dementia, protein deposits called Lewy bodies develop in nerve cells in the brain regions involved in thinking, memory and movement. The disease affects 1.4 million people in the U.S., according to the association.
“Successful clinical trials are the holy grail for all the stakeholders in the Lewy body dementia treatment community, so the goal of the Research Centers of Excellence program is to benefit patients with the disease,” says Dr. Boeve, who is Mayo Clinic’s lead primary investigator for the program and The Little Family Foundation Professor of Lewy Body Dementia. “Lewy body dementia is chronically underdiagnosed, so we seek to address a decades-old challenge of finding and enrolling enough correctly diagnosed patients, working with clinicians and staff who understand the disease, and reaching the right patients and families to encourage participation in clinical trials. Now we can address all three. The centers involved in the program are working together with a common goal to improve the understanding of the disease in the scientific, medical and general public communities.”
The program aims to establish a network of institutions that can host clinical trials and also share the common vision of providing the highest level of clinical care over the course of Lewy body dementia treatment. In addition, the network seeks to increase access to support for caregivers and people living with Lewy body dementia, increase knowledge of the disease among the medical community, and construct administrative infrastructure and generate the resources necessary to further advance research and care.
Patients with Lewy body dementia are seen across Mayo Clinic, and related research is performed at Mayo Clinic's Arizona, Florida and Minnesota campuses. Mayo Clinic’s Florida and Minnesota campuses received the Research Centers of Excellence designation because of a focus on Lewy body dementia-related clinical and research activities over the past 20 years. In addition to Dr. Boeve, Mayo investigators involved in the program include Neill Graff-Radford, M.D., Angela Lunde and Tanis Ferman, Ph.D.
“This network can share a standardized approach to patient recruitment and data collection for clinical trials,” says Mike Koehler, CEO, Lewy Body Dementia Association. “That is why we are so grateful to have the expertise of 24 pre-eminent academic and medical research centers, coordinated by Mayo Clinic.”
The centers, which are spread across 17 states and the District of Columbia, are in 23 metropolitan areas. Each center is led by primary investigators and co-investigators to conduct trials and provide expert care. View a full listing of the centers and more about the program on the Lewy Body Dementia Association website.
The centers were chosen for their clinical expertise in Lewy body dementia and their experience running clinical trials in related conditions. Combined, the 33 investigators have run 380 clinical trials over the past five years. The centers will collaborate on industry-sponsored clinical trials and apply for federal funding for research initiatives. As the program evolves, the association also plans to fund clinical research initiatives.
