On September 4-5, 2024, the National Advisory Neurological Disorders and Stroke (NANDS) Council met in Bethesda, MD. The NANDS Council advises NINDS on policy and procedures affecting NINDS research programs, provides a second level of review for all grant and cooperative agreement applications considered by the Institute for funding, and serves as an important source of external input on a range of other topics important for the Institute. Members of the NANDS Council are highly accomplished scientists and clinicians, as well as members of the public, such as representatives from patient advocacy groups. We greatly value the time and expertise they lend to the federal government to help us meet our mission.
In my opening Director’s Report to Council, I was pleased to share two significant updates about NINDS leadership. First, Annapurna Poduri, M.D., M.P.H., was appointed as NINDS Deputy Director. Dr. Poduri is a distinguished pediatric neurologist, currently serving as Director of the Epilepsy Genetics and Neurogenetics Programs, Associate Chief for Academic Development in the Department of Neurology, and the Diamond Blackfan Chair of Neuroscience Research at Boston Children’s Hospital. Additionally, I announced the selection of Andrea Meredith, Ph.D., as the new NINDS Associate Director for Extramural Activities. Dr. Meredith currently serves as Professor of Physiology at the University of Maryland School of Medicine, where she runs a highly successful research program. My sincere thanks to Amy Bany Adams, Ph.D., Associate Director for Scientific Management and Operations, for serving as Acting Principal Deputy Director, and David Owens, Ph.D., Deputy Director for Extramural Activities, for serving as the Acting Director of the Division of Extramural Activities.
While we have many successes to celebrate, we also have many challenges to navigate. Back in April, I outlined some strategies we are using to navigate the current budget landscape, including championing investigator-initiated research by protecting the payline. This remains a top priority. However, inflation has hit the biomedical research community hard, and as a result, the cost of research continues to increase. Currently, the average total cost of an R01 (the most common grant type for independent research projects) within the payline at NINDS is $557,000, up from $530,000 in 2023. NIH appropriations have not increased at the same rate as inflation. As a result of the increase in the cost of research and budget uncertainty for the current fiscal year (FY 2025), we are starting the year with a conservative 8th percentile interim payline for most applications. We recognize that this unprecedented step of only being able to fund 8 percent of the applications received means that extraordinary science is not being funded and that many productive labs are at risk. At the advice of our Council, we are continuing the increased administrative cuts put in place last year to ensure we can fund as many investigators as possible during FY 2025. We are hopeful we can reach a higher final payline for FY 2025 once we have our budget, so we encourage you to continue to track our NINDS paylines, including the early-stage investigator payline and Alzheimer’s Disease/Alzheimer’s Disease-Related Dementia (AD/ADRD) payline.
As we face these challenges, it is more important than ever that we work with our partners inside and outside of government to be as strategic as possible. I closed my remarks by highlighting several of our efforts to bring the scientific community together to discuss pressing scientific questions, research priorities, and science highlights. For instance, I highlighted a recent scientific success involving the creation of a highly accurate brain-computer interface (BCI) for transforming brain activity associated with attempted speech into text on a computer screen. The BCI was implanted in a patient with Amyotrophic Lateral Sclerosis (ALS) with tetraparesis and severe dysarthria, and it sustained 97.5% accuracy beyond eight months after surgical implantation. You can watch a video of this extraordinary achievement in action. Much of the initial technologies for this study was funded by the Brain Research Through Advancing Innovative Neurotechnologies® (BRAIN) Initiative, or The BRAIN Initiative®, an ambitious NIH-wide program that is led by NINDS and the National Institute of Mental Health. This work shows the power of supporting bold research programs that push the frontiers of what we are capable of and could have a massive impact on the lives of individuals who struggle to communicate due to neurological disorders.
I discussed our recent Annual Nonprofit Forum, which featured keynote speaker and ALS activist, Mindy Uhrlaub, and focused on empowering patient populations. In addition, we recently hosted a hybrid workshop on Genetic Strategies to Treat the Epilepsies, which brought investigators who have developed genetic strategies to treat other neurological diseases together with investigators who are developing or are interested in developing genetic treatments for the epilepsies. Finally, we will have an upcoming New Frontiers in Cellular and Molecular Neuroscience Workshop, planned as part of the implementation of the recommendations from our Fundamental Neuroscience Working Group of NANDS Council.
Following my Director’s Report, Fyodor Urnov, Ph.D., Professor of Molecular Therapeutics at the University of California, Berkeley, and Director of Technology and Translation at the Innovative Genomics Institute, discussed the promises and challenges ahead for making gene therapy affordable and accessible to patients. Gene therapies represent a new frontier in treatments for many neurological disorders, but all sectors, including regulation and commercialization, will need to work together to ensure that they are used to their full potential.
Next, the annual AD/ADRD program update was presented to NANDS Council. This program is a partnership between the National Institute on Aging and NINDS and a prime example of what we can achieve through collaboration across Institutes. One recent success is 5-Cog, a five-minute cognitive assessment coupled with a decision tree embedded in electronic medical records that improves dementia care in primary care settings. Early detection will mean that patients get faster access to support services and critical healthcare planning. Projects like 5-Cog are responsive to research milestones developed through a rigorous planning process led by NINDS that takes place every three years, where experts in the field meet to develop national research recommendations for AD/ADRD. These recommendations are presented at the ADRD Summit for public input before being finalized and becoming milestones in the National Plan to address AD/ADRD. Planning for the 2025 ADRD Summit, which will next be held March 25-26, 2025, is currently underway.
The NANDS Council Neural Exposome Top Priorities (NEXT) Working Group presented recommendations from this priority setting effort. The exposome includes not only environmental, chemical, and biological toxins, but also psychosocial and internal factors, such as diet and the microbiome, and these exposures may occur anytime from in utero to late in life. The Working Group identified critical scientific gaps in our understanding of how the exposome affects brain health and defined six priority areas for research: (1) Identify exposomic factors that influence neurological health; (2) Conduct fundamental mechanistic research to determine how these factors influence neurological health; (3) Evaluate exposomic factors in human/population research studies; (4) Create a multi-disciplinary pool of investigators to assess the neural exposome; (5) Develop resources and tools to assess the neural exposome; and (6) Foster collaborations and partnerships to accelerate and amplify exposomic research. NANDS Council approved the group’s recommendations, and implementation planning is now underway.
Richard Benson, M.D., Ph.D., Director of the NINDS Office of Global Health and Health Disparities, announced the launch of a new strategic priority setting working group for global health. The primary goal of global health efforts at NINDS is to build sustainable capacity in Low- and Middle-Income Countries (LMICs) through investments in research and training to address public health challenges associated with neurological diseases. In 2021, conditions affecting the nervous system were collectively the leading contributor of global disease burden. Our investments in global health will enable studies of disorders more frequently occurring in the LMIC, and therefore more easily studied, and leverage modest investments to improve neurologic health in the LMIC’s region. This strategic priority setting effort will leverage external input including a Request for Information for public input and a 2025 workshop.
The open session of the September NANDS Council meeting concluded with presentations of research initiative concepts–new ideas that, if approved, can become Notices of Funding Opportunities (NOFOs) that enable us to continue to meet our mission. Each of these concepts is the result of careful research, conversation, and deliberation between NINDS staff and external partners on the most impactful steps we can take to improve neurological health for all people.
We work toward advancing the strategic scientific efforts discussed during Council, and all ongoing priorities within our 2021-2026 Strategic Plan, through the most judicious stewardship of resources. We continually look for ways to innovate to continue to meet our mission within the current financial constraints and as new challenges arise, and we are grateful for our partners across the NIH, other government agencies, members of the research community, patients, advocates, nonprofit and industry partners, and people with lived experience of neurological disorders, who share our goal to understand the brain and develop more effective treatments for the most devastating neurological conditions.
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