In May, the National Institutes of Health (NIH) hosted a meeting to present recommended national research priorities for non-Alzheimer’s dementias, including LBD, frontotemporal degeneration and vascular dementia. A two hour session was dedicated to LBD, featuring presentations from an international panel that included members of the LBDA Scientific Advisory Council. LBDA staff and board members, as well as members of the LBD community, attended the event.
Seven major research priorities were proposed for LBD, including longitudinal studies from the earliest stage of LBD through autopsy, developing diagnostic biomarkers and animal models of LBD, as well as symptomatic and disease-modifying drug trials. Feedback was solicited from the organizers on the recommendations for each disease. Public comment from LBDA underscored the burden of LBD on society and its greater impact on caregivers than Alzheimer’s disease, the urgent need for LBD education among healthcare professionals and the importance of clinical trials for symptom amelioration.
“This meeting was a major milestone of the growing focus on Lewy body dementia at NIH,” stated Angela Taylor, LBDA’s Director of Programs who attended the event. “And it affirmed how vital the voice of the LBD community is in ensuring the devastating impact of LBD is appreciated at the federal level.”
A final report of recommendations will be submitted to the Council for the National Institute on Neurological Disorders and Stroke and the Advisory Council for the National Alzheimer’s Plan, which mandated that the federal government establish a strategy to address dementia by 2025. The meeting report will inform NIH about the most needed and promising areas of non-Alzheimer’s dementia research, and subsequently will influence funding decisions.