In February of 2020 B.C. (before COVID-19), LBDA planned to host/attend 3 day-long meetings related to LBD research in June in Cleveland, OH. And then the pandemic hit. So, we said farewell to our planned visit to the Cleveland Clinic (and the Rock and Roll Hall of Fame) and hello to 3 days of web conferences. Here’s a glimpse behind the curtain on those meetings.
- On June 18th we hosted our 2nd annual Industry Advisory Council Meeting. This cross-stakeholder group of thought leaders from the clinical/scientific community, industry and federal agencies was first convened in 2019 to build synergy around studying new treatments for LBD. This year program directors from the National Institutes of Health (NIH) highlighted how LBD research is addressed within NIH programs for Alzheimer’s disease and Parkinson’s disease. Then representatives of ACADIA Pharmaceuticals, Eli Lilly and Eisai reviewed how each company uniquely adapted ongoing clinical trials in response to COVID-19. LBD researchers addressed the challenges faced by their institutions in conducting trials; Michael Belleville, an LBD clinical trial participant, shared his positive experience when the trial shifted to virtual study visits. Dr. Brad Boeve of LBDA’s Scientific Advisory Council presented on opportunities to develop and validate outcome measures for use in LBD clinical trials. LBDA’s Angela Taylor reviewed the need for and opportunities to develop patient experience data, followed by Dr. Melissa Armstrong’s presentation of unpublished data on research priorities from a small cohort of people with LBD and their care partners.
- Then on June 19th we attended the 4th annual DLB Consortium (DLBC) Investigator Meeting, which is sponsored by LBDA. The 10-site, NIH-funded consortium is led by Dr. James Leverenz of Cleveland Clinic. The DLBC has a 5-year longitudinal study underway, taking a deep dive into the biology of the disease and how it changes over time, in pursuit of a biomarker.
- And on June 20th, we wrapped up with the 3rd annual LBDA Research Centers of Excellence Investigator Meeting. Led by Dr. Brad Boeve of Mayo Clinic, researchers from 26 academic sites gathered via web conference to discuss progress being made by 4 working groups to advance clinical trial design, clinical care and professional education, engagement, support and education of the LBD community, and industry engagement. There was a special emphasis on benefits and challenges when the delivery of clinical care and support shifted to telehealth in response to the pandemic. And attendees learned about LBDA’s newest research working group delving into the possible risks and prevention strategies around suicidal thinking in people with LBD.