With the formation of the Research Center of Excellence (RCOE), the LBDA has organized the first-ever comprehensive network of research centers to conduct LBD clinical trials, provide community outreach, and expand professional continuing medical education. Representing 24 of medicine’s most prestigious academic medical research centers, the LBDA RCOE will help to streamline and standardize LBD science while connecting patients and families with the latest opportunities to participate in LBD clinical trials.
Driving Advanced Clinical Trials
Through our collaborative efforts and accruing clinical expertise, the LBDA aims to improve LBD clinical trial research standards, while improving trial efficiencies.
As part of the LBDA RCOE mission, we are working to ensure that the RCOE network and our individual centers will be better able to coordinate with the National Institute of Neurological Disorder and Stroke (NINDS), and the National Institute on Aging (NIA), both to explore best research alternatives and execute NINDS and NIA-funded research grants that advance LBD diagnosis and treatment. In addition, the LBDA will be establishing an Industry Advisory Council, bringing together all stakeholders to further help address the challenges of LBD research.
More support for patients, families, and providers
Since our founding, the LBDA has been the primary source for the LBD community to seek advice on where they can find advanced care and treatment for LBD, as diagnosis and treatment of Lewy body dementia is a challenge, even for clinicians familiar with the disease.
With our RCOE network, the LBDA has identified and will be partnering with 33 of the nation’s leading LBD research-clinicians to which LBD patients and their families can turn for advanced LBD diagnosis and treatment. Through our efforts we will be connecting many experienced physicians and respected institutions that are committed to providing advanced LBD care, community outreach, and support.
While this national network is a much-needed resource for LBD patients and families, the LBDA RCOE is also committed to extending this critical knowledge to all health care providers nationwide – from specialists like neurologists, geriatricians and physiatrists, to primary care physicians, hospitalists, emergency medicine physicians, nurse practitioners, physician assistants, pharmacists, and social workers.
In 2011, Congress passed the National Alzheimer’s Project Act, which focused on addressing the needs of all those affected by dementia. In 2015, NINDS began providing federal research dollars to improve the diagnosis and treatment of LBD. In late 2016, the pharmaceutical industry initiated the first LBD-targeted clinical trials.
Recognizing this significant opportunity, the LBDA began a robust request for application (RFA) process in 2017 that included the formation of a prestigious team of thought leaders in LBD and the establishment of a rigorous criteria for selection. Applications were solicited and received from numerous institutions from around the country and then reviewed by the selection committee for final approval into the RCOE.
Countless hours of effort later, the LBDA RCOE is helping the LBD research community build the infrastructure needed to move LBD research forward and ultimately, help the patients and families affected by LBD.
As an organization, the LBDA has long sought to identify and work with national academic medical research institutions engaged in Lewy body dementia clinical and research activities. As awareness of LBD grows, our focus on clinical care and research has grown increasingly important, as more federal research funding is becoming available and more drugs are being developed for the disease and its related conditions. The time is right to launch this important and exciting initiative!
For more information, questions or comments, contact Mike Koehler.