Highlights from May 2023 National Advisory Neurological Disorders and Stroke Council Meeting

From May 31-June 1, 2023, the National Advisory Neurological Disorders and Stroke (NANDS) Council met virtually and in-person in Bethesda, Maryland. NINDS Council members include many talented extramural science and health experts, who contribute technical expertise and an understanding of the needs of the research communities of academia and industry. In addition, Council includes representatives from patient groups, experts on ethics, and other Lay members, who provide a critical perspective of people affected by brain and neurological disorders. This was our first Council meeting with an in-person component in three years, and it was a pleasure to connect with these thoughtful individuals on a range of complex topics at this meeting.

The NANDS Council provides a second level of review for all grant and cooperative agreement applications that NINDS is considering for funding. We also rely on their expertise and experience to advise us on program planning, extramural research policy issues, concept clearances, and to review reports, priorities, and accomplishments of both our intramural and extramural research programs.

In my Director’s Report to the NINDS Council, I shared updates on NINDS and NIH budget appropriations for Fiscal Year (FY) 2023, including dedicated funds to NINDS for research on Alzheimer's Disease-Related Dementias (ADRD) and continued support for the Undiagnosed Diseases Network as it transitions from the Common Fund to trans-NIH support led by NINDS. In FY 2023, $75 million was included in the NIH Office of the Director budget to support research studies using data from expanded access to investigational drugs or biological products for amyotrophic lateral sclerosis (ALS), as authorized by the ACT for ALS (PL 117-79). As we await the final FY 2024 budget, and as research costs continue to increase, NINDS is developing funding strategies and considering grant policy changes that will best advance our mission. NINDS leadership plans to discuss options for addressing a possibly challenging budget environment with Council in the fall.

Approved by Council during our most recent meeting, I’m excited to share with you three new recipients of the Javits Neuroscience Investigator Award. This award was established by Congress in 1983 in honor of the late Senator Javits (R-NY), who was himself afflicted with amyotrophic lateral sclerosis (ALS) and was a strong advocate of research in a wide variety of disorders of the brain and nervous system. The latest awardees include Drs. Dalton Dietrich, Cecilia Moens, and Gary Yellen. Dr. Dietrich is a distinguished and an internationally recognized leader in the field of central nervous sytem injury and repair, more specifically in traumatic brain injury, spinal cord injury, as well as peripheral nerve injury. Dr. Moens is a highly respected developmental biologist and a leader in the study of early neuronal development using zebrafish as a model. Dr. Yellen is recognized internationally as a pioneer in sensory development and for his expertise in detailed molecular and biophysical studies of voltage-gated channels. We congratulate these investigators and look forward to seeing their remarkable work unfold.

Our work to carry out the NINDS mission for all people means that we must support research that can identify, monitor, and target the various factors that influence disparities in neurological disease. This Council meeting included discussion of new research initiative concepts from our Office of Global Health and Health Disparities (OGHHD), led by Dr. Richard Benson. Following an extensive health equity research strategic planning effort, the office presented its next steps for implementation. These includes an overarching initiative for Community-Engaged Health Equity Research in Neuroscience (HERN), with key themes of understanding specific drivers of health disparities and barriers to neurological health equity; developing sustainable interventions to decrease disparities in neurological health among disadvantaged groups; and enhancing training and capacity building. Three cleared concept initiatives will enable planning to build collaborative research teams and establish community engagement with populations that experience health disparities and assess feasibility of neurological health equity projects; and support multidisciplinary research teams with established community engagement and evidence-based projects to establish clinical trial readiness. These cleared concept initiatives will also work to expand community engagement efforts and enhance/educate research teams in HERN. These collective efforts represent just the first step in the important work we are supporting to understand and address health disparities in neurological disease.

In addition, NANDS Council members received diversity, equity, inclusion, and accessibility (DEIA) updates from across NIH. NINDS has been at the forefront of programs that ensure a vibrant, talented, and diverse neuroscience workforce, led by Dr. Michelle Jones-London. These programs have included Enhancing Neuroscience Diversity through Undergraduate Research Education Experiences (ENDURE), which prepares undergraduates to enter and successfully complete neuroscience Ph.D. programs, and the NIH Blueprint and BRAIN Initiative Diversity Specialized Predoctoral to Postdoctoral Advancement in Neuroscience (D-SPAN) Award, which supports a defined pathway across graduate and postdoctoral career stages in neuroscience research. Despite positive gains in the early career pathway for diverse trainees, disparities persist in research project grant funding (usually through R01s). To this end, NINDS developed and is one of 10 participating Institutes and Centers for the “Research Opportunities for New and "At-Risk" Investigators to Promote Workforce Diversity” R01, as a strategy to improve funding disparities for investigators from diverse groups, including those who are underrepresented in the health-related sciences.

Also joining the Council meeting to share updates on DEIA activities were Dr. Michael Lauer, NIH Deputy Director for Extramural Research, and Dr. Marie Bernard, NIH Chief Officer for Scientific Workforce Diversity (COSWD). Recent analyses from the Office of Extramural Research (OER) reveal a competitive ecosystem for NIH grant applications, and although the numbers of Black and Hispanic investigators on research project grants are rising, especially for early stage investigators, these numbers remain low relative to the total pool of applicants and funded investigators. The NIH DEIA Strategic Plan released in March 2023 includes additional short- and long-term goals to address racial, ethnic, and gender disparities at NIH, and to identify and address barriers in access to NIH funding by investigators studying health disparities. These activities center on embracing, integrating, and strengthening DEIA across all NIH activities in service of the NIH mission, and for NIH to be a people-centered organization, representative of our Nation’s diversity, where all people feel a sense of belonging as they advance the NIH mission. Dr. Bernard also presented updates on the NIH UNITE Initiative, a people-focused and data-driven effort to identify and address any racial and ethnic disparities. UNITE contributed to the launch of the Community Partnerships to Advance Science for Society (ComPASS), a program of the NIH Common Fund that aims to catalyze, deploy, and evaluate community-led health equity structural interventions that leverage partnerships across multiple sectors to reduce health disparities and develop new health equity research models across NIH and other federal agencies.

As these updates illustrate, NINDS intends for our mission and our work to be truly inclusive. Unfortunately, the word “burden” in our current mission statement can suggest ableist beliefs, though our focus has always been on reducing suffering. Thus, we are working to update the NINDS mission statement to reflect our goal to use knowledge about the nervous system to improve neurological health for all people. I am grateful for the input Council members provided on this effort, and I hope to share more updates on our new mission statement soon.

Finally, as we look further ahead, 2025 will mark the 75th anniversary of NINDS, which was created by Congress in 1950. This occasion will provide a terrific opportunity to celebrate the progress we have made in unraveling the mysteries of the brain and nervous system and to imagine the future of neuroscience and NINDS.

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