LBDA

A Great Beginning for the RCOE Program

The Lewy Body Dementia Association’s (LBDA) Research Centers of Excellence (RCOE) program has had a very fruitful first nine months!

Launched in late 2017, the LBDA RCOE program is the nation’s first-ever comprehensive network of academic research centers to conduct LBD clinical trials, provide community outreach, and expand professional continuing medical education. While we are hard at work planning our second year of “excellence in LBD,” here’s a glimpse at what is going on behind the scenes in the RCOE program.

Our early efforts focused on forming and engaging expert working groups to start diving into key LBDA priorities: LBD clinical care and professional education, clinical trial design and optimization, LBD community education and support, and industry engagement. The working groups’ initial efforts included surveying all sites about their clinical practices and suggested channels for continuing medical education on LBD, researchers’ clinical trial interests and site infrastructure, and ongoing education and support programs. The results were then presented at the first RCOE Investigator’s Meeting, held in December 2017 in New Orleans, LA.

During the next quarter while a meetings proceedings article started to take shape, we began assessing what potential experimental or existing treatments may be ready for Phase III clinical trials in LBD. A grant proposal was submitted on behalf of the RCOE network by Dr. Jennifer Goldman at Rush University to the National Institutes of Health as a result of those efforts. And a number of intriguing and exploratory meetings with industry suggest LBDA’s timing to launch the RCOE program was very astute. Industry interest in conducting LBD clinical trials is on a strong upswing.

In July Dr. Brad Boeve of Mayo Clinic and the RCOE Coordinating Center presented during the Alzheimer’s Association International Conference in Chicago, IL about the launch of the LBDA RCOE. And most recently, we wrapped up our first round of annual reports from all RCOE sites, revealing the tremendous amount of research, education and support they deliver as a network. Together, the LBDA RCOE network:

  • Provides clinical care for an estimated 8,100 people with LBD
  • Submitted or published about 50 new research articles on LBD
  • Presented on LBD to approximately 7,000 healthcare professionals
  • Are hosting or planning 33 LBD support groups
  • Delivered educational presentations to about 1,400 members of the LBD community

And we’re just getting started! Stay tuned as we get rolling into year 2 of LBDA’s RCOE program! To learn more about the LBDA RCOE program, visit https://www.lbda.org/rcoe.

 

For more information, questions or comments, contact Mike Koehler.

17 States &
District of Columbia
23 Metro areas

LBDA RCOE areas of expertise

  • Dementia
  • Cognitive neurology
  • Behavioral neurology
  • Movement disorders
  • Neuropsychology
  • Neuro-ophthalmology

As the LBDA celebrates its 15th Anniversary in 2018, we wish to thank all of you who have supported us over the years in helping to bring LBD to the forefront of the dementia discussion. We are now excited and so pleased to be in a position to support the entire LBD research community. With your continued generosity and support we will carry on our efforts to improve diagnosis, treatment, and quality of life for those affected by LBD.

~ Mike Koehler, CEO, LBDA