The National Institute of Neurological Disorders and Stroke (NINDS) is committed to reducing the disproportionate burden of neurological disease borne by underserved groups of society, including race/ethnic, sex/gender minorities, rural, disabled, and socioeconomically disadvantaged populations, by funding a spectrum of research from basic through implementation science, and training the next generation of health disparities investigators.
In 2020, the NINDS Office of Global Health and Health Disparities within the Division of Clinical Research, in collaboration with the Office of Science Policy and Planning, embarked on a strategic planning process to address health disparities and inequities in neurological disorders through research. As a culmination of the strategic planning process, the NINDS hosted the Health Disparities and Inequities in Neurological Disorders Workshop (HEADWAY).
The goal of the HEADWAY workshop aimed to identify evidence-based interventions that are feasible and widely scalable, to diminish disparities and inequities in neurological disorders. This workshop assembled subject matter experts in various disciplines from clinical and health services researchers, to implementation and behavioral scientists, along with community stakeholders and patient advocates. Findings and recommendations from the workshop and strategic planning process will be placed on the NINDS website and used as resources for setting priorities and developing initiatives over the next 5 – 10 years.
The three-day HEADWAY Workshop information, recordings, and resources were archived and are available to view here:
Sponsored By: National Institute of Neurological Disorders and Stroke (NINDS)
| Session(s) | Meeting Dates | Location |
|---|---|---|
|
Session I and II |
Wednesday, September 22, 2021 |
NIH Videocast |
|
Session III and IV |
Thursday, September 23, 2021 |
|
| Break-out group discussions (Day 3) |
Friday, September 24, 2021 |
Zoom Breakout rooms |
Speakers
Session Presenters and Bios(pdf, 514 KB)
Agenda
| Time | Agenda Item |
|---|---|
| 12:00 – 12:15 pm |
Welcome and Opening Remarks |
| 12:15 – 12:30 pm |
NIH Vision for Health Disparities and Inequities in Health Care and Minority Health |
| 12:30 – 1:00 pm |
NINDS’ dedication to the Elimination of Health Disparities and Inequities in Neurological Disorders |
| SESSION I |
[ Economic, Epidemiological, and Interventional Analyses ]
|
|
1:00 – |
Excess Mortality in Neurological Disorders |
| 1:30 – 2:00 pm |
REGARDS – Health Disparities in Stroke and the Role of Primary Prevention |
| 2:00 – 2:15 pm |
BREAK |
| 2:15 – 2:45 pm |
Defining Health Disparities in Neurological Disorders and Early Clinical Studies |
| 2:45 – 3:15 pm |
Disparities in Neurological Outpatient Follow-up |
| 3:15 – 3:45 pm |
Social Determinants of Health – Neurological Interventions Dr. Amy Towfighi Associate Professor of Neurology and Preventive Medicine (Clinical Scholar) at the University of Southern California |
| 3:45 – 3:55 pm |
BREAK |
| SESSION II |
[ Collaborative Research Teams – NIH ]
|
| 3:55 – 4:10 pm |
The National Institute of Neurological Disorders and Stroke’s (NINDS) Mind Your Risks Campaign Ms. Barbara McMakin Chief, NINDS Media Relations, Office of Neuroscience Communications & Engagement (ONCE) |
| 4:10 – 4:35 pm |
The National Cancer Institute’s (NCI) Comprehensive Partnerships to Advance Cancer Health Equity (CPACHE) Dr. H. Nelson Aguila Deputy Director, National Cancer Institute’s (NCI), Center to Reduce Cancer Health Disparities (CRCHD) |
|
4:35 – |
The National Heart, Lung, and Blood Institute’s (NHLBI) Disparities Elimination through Coordinated Interventions to Prevent and Control Heart and Lung Disease Risk (DECIPHeR) Program Dr. Geroge A. Mensah Clinician-scientist and Director, Center for Translation Research and Implementation Science at the National Heart, Lung, and Blood Institute (NHLBI), National Institutes of Health (NIH) |
| 5:00 pm | Adjourn |
| Time | Agenda Item |
|---|---|
| 12:00 – 12:05 pm |
Welcome Dr. Richard Benson Director, Office of Global Health and Health Disparities |
SPECIAL SESSION |
|
|
12:05 – |
The Science of Structural Racism
|
| SESSION III |
[ Public Private Partnerships (PPPs) to Address Health Disparities – Collaborative Research Teams ]
|
| 12:35 – 1:05 pm |
PPPs: Patient-Centered Outcomes Research Institute (PCORI) |
| 1:05 – 1:35 pm |
PPPs: The Johns Hopkins University and The Mayo Clinic Dr. LaPrincess Brewer |
| 1:35 – 2:05 pm |
PPPs: The Role of Pharma – Genentech |
| 2:05 – 2:20 pm |
BREAK |
| SESSION IV |
[ Targeted Interventions ]
|
| 2:20 – 2:50 pm |
Health Disparities Implementation Science |
| 2:50 – 3:20 pm |
Health Disparities Education and Training |
| 3:20 – 3:50 pm |
Community Engagement and Clinical Interventions Dr. Bernadette Boden-Albala Director and Founding Dean, Program in Public Health, Susan & Henry Samueli College of Health Sciences at the University of California, Irvine Professor, Department of Health, Society and Behavior and the Department of Neurology in the School of Medicine |
| 3:50 – 4:00 pm |
Break |
| 4:00 – 4:30 pm |
Adverse Childhood Events (ACES) and Lifetime Impact |
| 4:30 – 5:00 pm |
Disparities in Neurological Care/Service for Sexual/Gender Minorities Dr. Nicole Rosendale Assistant Professor of Neurology at the University of California San Francisco (UCSF) |
| 5:00 pm | Adjourn |
| Time | Agenda Item |
|---|---|
| 12:00 – 12:10 pm |
Welcome Dr. Richard Benson Director, Office of Global Health and Health Disparities |
|
12:10 – |
Break-out Group Discussions: Group (A): Strategies for Interventions to Address Neurological Group (B): Cross-cutting Themes and Social Determinants of Health: Group (C): Pediatrics and Adverse Childhood Events (ACEs) Group (D): Communication of Scientific Information to the lay Public, Group (E): Health Disparities Research & Training |
| 12:10 – 2:40 pm |
BREAK |
| 2:40 – 4:45 pm |
Presentation of Break-out Group Summaries
Dr. Edwin Trevathan |
| 2:40 – 3:05 pm |
Group (A): Strategies for Interventions to Address Neurological |
| 3:05 – 3:30 pm |
Group (B): Cross-cutting Themes and Social Determinants of Health: |
| 3:30 – 3:55 pm |
Group (C): Pediatrics and Adverse Childhood Events (ACEs) |
| 3:55 – 4:20 pm |
Group (D): Communication of Scientific Information to the lay Public, |
| 4:20 – 4:45 pm |
Group (E): Health Disparities Research & Training |
| 4:45 – 5:00 pm |
Closing Remarks and Next Steps |
| 5:00 pm | Adjourn |
Contact
Contact: Ms. Naomi Booker
Contact Email: Naomi.booker@nih.gov
Join and Connect with us! Subscribe to the NINDS-OGHHD Listserv
Related Resources
NINDS Director’s Message - Making HEADWAY on Inequities in Neurological HealthThe term “HEADWAY” means moving forward or making progress, especially when circumstances make things slow or difficult. When it comes to health equity in neurological disorders, never has a term more accurately described a process. In 2010, Dr. Story Landis—my predecessor as Director of NINDS—charged an advisory working group of NANDS Council to review the state of disparities research in neurological health and generate recommendations on how the Institute could make progress against such disparities(pdf, 196 KB). Now, a decade later these same neurological health disparities remain. Under the leadership of Dr. Richard Benson, the NINDS Office of Global Health and Health Disparities – in collaboration with other NINDS offices and staff – intends to expand and strengthen research efforts to design solutions that can make a difference for those neurohealth inequities.
NINDS Office of Global Health and Health Disparities
The Office of Global Health and Health Disparities (OGHHD) within the Division of Clinical Research, leads the coordination and development of programs and initiatives that foster global research and research on health disparities in neurological disorders and stroke.
NINDS Office of Programs to Enhance Neuroscience Diversity
The mission of the Office of Programs to Enhance Neuroscience Workforce Diversity (OPEN) is to represent NINDS at all levels of NIH in matters pertaining to NINDS workforce diversity. OPEN develops and implements individual and institutional funding opportunities while working across the NINDS scientific portfolio to promote inclusion.
Mind Your Risks
Mind Your Risks® is a public health campaign that educates people with, or at risk of, high blood pressure about the importance of taking charge of their health. Controlling high blood pressure can help reduce the risk of having a stroke and developing dementia later in life.
NIH Health Equity Research
NIH is committed to:
- Improving minority health and reducing health disparities
- Removing the barriers to advancing health disparities research
NINDS Scientific Resources
NINDS Common Data Elements (CDEs)
The CDE Catalog is a directory of the available NINDS CDEs. Users can search the Catalog to isolate a subset of the CDEs (e.g., all stroke-specific CDEs, etc.), and to view and download details about the CDEs. The NINDS strongly encourages researchers who receive funding from the Institute to ensure their data collection is compatible with these common data elements (CDEs).
The Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System
The National Institutes of Health (NIH), in partnership with the Department of Defense (DoD), is building a secure, centralized informatics system (database) for traumatic brain injury (TBI) research. The FITBIR Informatics System is an extensible, scalable informatics platform for TBI-relevant data (medical imaging, clinical assessment, environmental and behavioral history, etc.) and for all data types (text, numeric, image, time series, etc.). FITBIR was developed to share data across the entire TBI research field and to facilitate collaboration between laboratories, as well as interconnectivity with other informatics platforms.
The NINDS Biospecimen and Data Repository (BioSEND)
BioSEND is a biorepository operated by Indiana University with funding from NINDS. It currently banks a variety of biospecimens including DNA, plasma, serum, RNA, CSF, whole blood, and saliva from a number of clinical studies within the NINDS mission.
The NINDS Human Cell and Data Repository
The NINDS is committed to providing well-characterized cell sources to both academic and industry investigators to advance the study of neurological disorders. Cell sources currently include fibroblasts and/or induced pluripotent stem cells for Alzheimer’s Disease, Amyotrophic Lateral Sclerosis (ALS), Ataxia-telangiectasia, Frontotemporal Lobar Degeneration (FTD), Huntington’s Disease, Parkinson’s Disease, and healthy controls. Cell sources, including isogenic cell lines for current and new diseases covered by the NINDS, will be added over the next several years. The NINDS Human Cell and Data Repository (NHCDR) provides new tools for analytics, searching, and ordering for all components of the repository.
The NINDS Human Genetics Resource Center
The NINDS Human Genetics Resource Center banks samples from subjects with cerebrovascular disease, dystonia, epilepsy, motor neuron disease, Parkinsonism and Tourette Syndrome, as well as population controls.
NIH NeuroBioBank
The NIH-funded NeuroBioBank (NBB) was established in September 2013 as a national resource for investigators utilizing human post-mortem brain tissue and related biospecimens for their research to understand conditions of the nervous system.