Consortia and Networks Forming to Take on Lewy Body Dementia

Jul 21, 2019 | CNS, Dementia with Lewy Body, DLB

Dementia word on tablet screen with medical equipment on background

Various consortia and networks combining researchers from Europe, Asia, and North and South America grow to build the infrastructure for longitudinal observational studies for biomarker discovery and for clinical trials for Lewy Body Dementia research.

Key Challenges

Challenges with Dementia with Lewy Body (DLB) is difficult to identify reports Alzforum. Moreover, many DLB clinical trials fold due to enrollment goal obstacles. This is in part because DLB is difficult to identify and less common. It is a hard disease to pin down due to its multitude of symptoms. For example, it can appear throughout the brainstem, limbic system, and cortex, and affect multiple body systems including movement, sleep, cognition, and autonomic functions. Famous comedian Robin Williams died from the disorder in 2014 described it as “ sea monster with 40 tentacles.”

Some Progress

However recent research collaborative consensus has established diagnostic criteria defined four symptoms and three indicative biomarkers. Physicians now have more tools to recognize the disease. DLB still only make up 4% of total dementia cases worldwide.

The Regional Consortia

European DLB Consortium

A one-stop-shop for investigators reports Dag Aarsland of King’s College London. Established in 2015, the consortium comprises 40 centers and 13 countries. Its first project was to consolidate into a single database the retrospective data on 1,208 Lewy body patients seen at centers. They are using this repository in Europe to better estimate the annual rate of cognitive decline in DLB, compare patterns of atrophy in DLB and AD, and correlate hypometabolism patterns with specific clinical symptoms.

The European DLB Consortium has yearned for a prospective cohort that will allow for a number of research efforts including identifying participants for clinical trials. And in fact, they established the foundation for such a cohort enrolling 623 patients from 12 countries to date. The consortium is setting up a European biobank.

United States DLB Efforts

In America activities are less centralized, comprising several separate initiatives. The largest DLB effort in the United States is led by James Leverenz of the Cleveland Clinic Lou Ruvo Center for Brain Health—the Dementia with Lewy Bodies—established by the National Institutes of Health in 2015 with a $6 million grant; this network of nine centers, coordinated by the Cleveland Clinic, plans to enroll 216 patients with probable or early-stage Lewy body disease into a longitudinal study. They will be extensively characterized, with the goal of identifying better biomarkers.

Other U.S. activities include:

  • Parkinson’s Disease Biomarker Program (PDBP) database, in a format compatible with other large databases such as the National Coordinating Center. Launched in 2013 by the National Institute of Neurological Disorders and Stroke, and started including DLB data in 2017.  Fluid samples will be stored at BioSEND, the NINDS repository at Indiana University.
  • Columbia University has established an ethnically diverse cohort of 160 DLB patients who will be followed annually and autopsied after death.
  • The Mayo Clinic in Jacksonville, FL will collect several types of longitudinal mapping data, including amyloid and tau, on a separate cohort of 90 DLB patients to find what markers best correlate with diagnosis and progression.
  • A University of Michigan study will compare imaging to rates of cognitive decline in 100 Lewy body dementia patients.


In Japan, large-scale DLB research has been underway for more than a decade. The DLB Society Japan, established in 2007, brings together 393 researchers, neurologists and psychiatrists report Manabu Ikeda of Osaka University. Their goal is to stimulate research, facilitate clinical trials, and inform the public and government about the disease. Many members run their own longitudinal cohorts.

Japan has also led the way in involving patients and families in research. The DLB Family Association meets annually with the DLB Society and a DLB Support Network run by local volunteers helps patients and families. These organizations aid recruitment, enabling Japan to run large clinical trials, Ikeda noted.

Japan approved the first DLB drug worldwide in 2014

This approval gave the green light to donepezil to treat cognitive impairment. And in 2018 Japan approved the antiepileptic drug zonisamide as an adjunct to levodopa for parkinsonism DLB. 

Additionally, Japan is presently participating in the international Phase 2 trial of Eisai’s phosphodiesterase 9 inhibitor, E2027, for cognitive decline in DLB. No other DLB trials are currently active in Japan, although another zonisamide study is planned for later this year.

Other Clinical Trials

Only a few other clinical trials are active including a Phase 2 trial of the cancer drug bosutinib and the related tyrosine kinase inhibitors nilotinib and KO706. There is also a Phase 2 trial of the MAP kinase inhibitor neflamapimod, a Phase 2 of LY3154207, a dopamine receptor modulatory, and a Phase 3 anti-psychotic pimavanserin

Other research efforts are distributed in the U.S and Europe as well as some activity in Latin America and the Caribbean. For more information follow the link to Alzforum for more details.


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