Health Disparities Research

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The NINDS is committed to reducing the disproportionate burden of neurological disease borne by underserved groups of society, including racial and ethnic minority, rural, and socioeconomically disadvantaged populations, by funding a spectrum of research from basic science through clinical studies and training the next generation of health disparities investigators.

Health disparities populations are in need of effective tailored prevention and treatment approaches. Poorer health outcomes in these populations when compared to the general US population have a dramatic impact on public health and are a significant cost to society. Supporting research to diminish health disparities in neurological disorders is inherent in the NINDS mission to reduce the burden of neurological disease, a burden borne by every segment of society. (see NINDS Office of Global Health and Health Disparities)

New Strategic Plan 

In 2020, NINDS began a new planning effort focused on health disparities and health equity for neurological disorders with a Request for Information (RFI) to gather broad input. The findings and recommendations of the NANDSC Working Group were approved by NINDS Advisory Council on February 2, 2022 and will be posted the NINDS Health Equity Strategic Planning page. Any additional updates related to this plan will be made available soon.

Health Disparities and Stroke

Stroke continues to be a major focus of NINDS health disparities research efforts, as it remains one of the largest and most burdensome disparities in neurological health with substantial opportunities for improving outcomes. NINDS supports research to better understand stroke disparities and to inform the development of effective interventions in specific population groups who suffer a disproportionately higher burden of stroke.

Current NINDS-supported stroke disparities research highlights:

 

 

Estimates of Funding for Various Research, Condition, and Disease Categories

Research/Disease Areas* FY 2020
(Actual)		 FY 2021
(Actual)		 FY 2022
Estimated
(Enacted)		 FY 2023
Estimated
Health Disparities $3,484 $4,362 $4,566 $4,963
*Dollars in millions and rounded
 
To learn more about this NIH Investment, please visit the Categorical Spending site and enter "Health Disparities".
 
 

Related Federal Programs

Stroke Disparities Program

The Georgetown University Stroke Disparities Program, is an integrated program of collaborative research designed to overcome current gaps in stroke care in underserved populations in Washington, DC. The research projects address 3 key areas of health disparities in stroke: 1) interventions to increase IV tPA utilization in underserved populations, 2) a health navigator intervention to improve secondary stroke prevention, and 3) further study the disparities in primary intracerebral hemorrhage and its pathophysiology. (Drs. Chelsea Kidwell, Bernadette Boden-Albala, and Alex Dromerick, Project PIs)

Alaska Native Stroke Registry (ANSR)

The Alaska Native Stroke Registry (ANSR) is the first study of Alaska Native populations to document the incidence of stroke among Native populations living in both rural and urban Alaska over a 4 year period. This work has also collected key information in rural communities focused on vascular risk behaviors which may be linked to the rapid increase in stroke risk factors in this culturally diverse Alaska Native population. (Drs. Bernadette Boden-Albala, James Allen, and Brian Trimble, Project PIs)

A Multi-Ethnic Comparative Effectiveness Study for Diagnosis of Cardiogenic Stroke

DeCODE Genetics' A Multi-Ethnic Comparative Effectiveness Study for the Diagnosis of Cardiogenic Stroke is an observational study that utilizes extended cardiac rhythm monitoring in stroke patients and studies the association of genetic variants to atrial fibrillation detection in blacks, whites, and Hispanics. (Dr. Jeffrey Gulcher, PI)

Greater Cincinnati Northern Kentucky Stroke Study (GCNKSS)

The Greater Cincinnati/Northern Kentucky Stroke Study (GCNKSS) is a large, population-based study of temporal trends in stroke incidence, risk factors, treatment and outcome within a biracial (African-American and white) population. Beginning in 1993, the GCNKSS identifies hospitalized and autopsied cases of stroke and transient ischemic attack in the 5-county region through screening of all hospitals and coroner's offices as well as sampling of nursing homes and physicians' offices. In addition, general population surveys have been conducted to assess stroke awareness in the community. (Drs. Brett Kissela and Dawn Kleindorfer, PIs)

Stroke Prevention/Intervention Research Program (SPIRP)

The Stroke Prevention/Intervention Research Program is comprised of several scientifically rigorous stroke culturally tailored interventions that address major contributors to stroke disparities including risk factor control, re-engineered treatment delivery, and state-wide barrier assessment and intervention. These multi-project cooperative agreements address major stroke disparities research gaps and have dissemination planning, training/education and community outreach as major components of their programs. The four funded SPIRP projects are described below.

Kaiser Permanente Northern California (KPNC) / University of California San Francisco (UCSF)

The vision of the Kaiser Permanente Northern California (KPNC) / University of California San Francisco (UCSF) collaboration for a Stroke Prevention/ Intervention Research Program in Health Disparities is the elimination in the United States of stroke disparities based on race, ethnicity, and socioeconomic status. Recognizing that there are multi-faceted reasons for the existence of stroke disparities and that these reasons vary across the populations, the initial focus will be the elimination of disparities in hypertension control between African Americans and Caucasians, with a secondary focus of developing knowledge that will help us understand the basis for the apparent increase of stroke incidence in recent years among young adults, most notably African Americans. The investigators will conduct pragmatic randomized controlled trial in the diverse adult population of KPNC that consists of both a clinical algorithm for rapid and effective blood pressure control, as well as a culturally-tailored dietary intervention aimed at more effective sustained blood pressure control. The results of this trial will be used in KPNC to model the impact of these interventions throughout the United States. The research team will also conduct an observational cohort study with KPNC to identify and quantify disparities in the temporal trends in known risk factors for stroke in young adulthood and identify novel factors that may contribute to stroke risk in young adults, and specifically to disparities in this risk. Finally, this project will include an education program for training in disparities issues related to stroke and for dissemination of the research methods and results.

New York University (NYU)/Columbia University

The New York University (NYU)/Columbia University’s Center for Stroke Disparities Solutions is a consortium between three academic institutions, a municipal healthcare system and home healthcare organization in New York City. The vision is to reduce stroke disparities with a particular focus on prevention of recurrent stroke among Blacks and Hispanics. Project 1 is a Practice-based Trial of Home BP Telemonitoring (HBPTM, )a comparative effectiveness trial of HBPTM alone versus HBPTM plus telephonic nurse case management on prevention of recurrent stroke. Project 2, Stroke Community Transitions Intervention, will evaluate the effectiveness of a culturally-tailored transition care program delivered by nurse practitioners and community health workers in improving BP control, functional outcomes and quality of life in homebound post-acute stroke patients. Project 3, Tailored Approaches to Stroke Health Education, will evaluate the effectiveness of a novel culturally tailored intervention using storytelling in increasing stroke literacy among adults in Black and Hispanic churches across NYC. These three projects address barriers that occur along the continuum of stroke care from the community to homecare, and primary care settings.

University of California, Los Angeles

The Los Angeles Stroke Prevention/ Intervention Research Program in Health Disparities is a multi-partnered, highly collaborative research and education center that spans the Los Angeles basin and aims to generate new knowledge about how to end disparities in stroke occurrence. It includes two randomized trials incorporating community health workers, mobile health technology, and the aging services network in Los Angeles, and embracing its most vulnerable and disadvantaged Hispanic, African-American, and Asian-American populations to generate evidence for sustainable, national models for preventing stroke. A third study will elucidate changes over two decades in novel biological and social risk factors for stroke among minorities using a national dataset. Community-academic research partnerships in stroke disparities will be continually sustained through bi-directional knowledge sharing.

University of Miami, Miller School of Medicine

The Hispanic Stroke Prevention/Intervention Research Program is a specialized collaborative center at the University of Miami, Miller School of Medicine, and involves collaborators in Puerto Rico at the University of Puerto Rico and Hospital HIMA. The mission of the center is to improve the treatment and prevention of stroke among Hispanics. This high-impact, multi-disciplinary research program will initiate the Florida Puerto Rico Stroke Registry and collate data from nearly 140 hospitals that are currently collecting American Heart Association’s Get With the Guidelines-Stroke data, as well as specific new data items. The aims are to help identify disparities in acute stroke care and secondary stroke prevention by race, ethnicity, and region and to educate stakeholders in approaches to improve stroke quality regarding stroke disparities. To effectively coordinate this bold initiative, create synergy among collaborating institutions, and support the public health and scientific aims of the registry, the center also contains an administrative core designed to effectively integrate the principal components of the registry and provide the requisite administrative infrastructure to enhance success; a training core focused on stroke disparities research and educational training for healthcare professionals including clinicians, nurses, and pharmacists in Florida and Puerto Rico; and a data management core to serve as the analytic hub of the center and to provide integration of data analysis and collection.

Proceedings & Outcomes

Inclusion Research

Findings from clinical trials are applied broadly in clinical practice and inform treatment guidelines that affect the clinical care of the general population.  To ensure that new preventive, diagnostic, and treatment approaches are safe and effective for diverse subgroups represented in the population, the studies must enroll sufficient numbers of minority subjects.  The NINDS helps its grantees adhere to the NIH policy for Inclusion of Women and Minorities in Clinical Research through several activities designed to facilitate investigators' efforts to meet enrollment targets.  In addition to the activities described below, a clinical trials recruitment expert in the NINDS Office of Clinical Research works directly with the grantees and program directors on issues related to recruitment and retention.

Clinical Research United in Successful Enrollment (CRUiSE)

NINDS co-sponsored an NHLBI workshop to address successful recruitment in clinical trials. Three key areas were addressed: 1) public and professional awareness and acceptance of clinical trials; 2) human subject research policies, guidelines, and reimbursement; and 3) clinical trial enrollment experience and practice.  A significant portion of the conference addressed the barriers and solutions to improve the inclusion of minorities in clinical trials.  Seventy-five participants, including invited speakers representing clinical researchers, private advocacy groups, industry, and federal sponsors and regulatory agencies, attended.

 

Inclusion Research funded by NINDS

The NINDS is supporting the Northern Manhattan Initiative for Minority Involvement in Clinical Trials (U24; PI: Bernadette Boden-Albala).  This project will develop and evaluate a toolkit of "Best Practices" for the conduct of successful recruitment of racial and ethnic minorities in neurological clinical trials.

 

Resources and Tools

Contacts

Richard T. Benson, M.D., Ph.D. | Director, Office of Global Health and Health Disparities
richard.benson@nih.gov

Cheryse A. Sankar, Ph.D. | Program Director, Health Disparities
cheryse.sankar@nih.gov

Stacey D. Chambers, M.S. | Scientific Project Manager
stacey.chambers@nih.gov

Erica L. Littlejohn, Ph.D. | Health Program Specialist
erica.littlejohn@nih.gov

Naomi E. Booker, M.P.H. | Health Program Specialist
naomi.booker@nih.gov

 

Funding Opportunities 

OGHHD Funding Opportunities

FOA Highlight

 

 

News & Events

  • NIMHD Inclusive Participation in Clinical Research Workshop |Thursday-Friday, March 30-31, 2023 from 11:00 a.m. – 5:00 p.m. ET | Register now!
  • NASEM Report Release: Advancing Anti-Racism, Diversity, Equity, and Inclusion in STEM Organizations: A Consensus Study |View Report

  • Upcoming NASEM Virtual Workshop Series! Addressing Health Disparities in Central Nervous System Disorders

    • Topics: Structural and Social Determinants of Risk, Disparities in Access to Care, and Moving Forward to Drive Transformative Change

    • When: April 13th, 18th, & 25th | Register now!

 

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REGARDS (REasons for Geographic And Racial Differences in Stroke)
REGARDS is a large cohort study evaluating the causes of racial and geographic differences in stroke mortality and cognitive decline in the United States.

The Northern Manhattan Study (NOMAS)
NOMAS is a prospective population-based study of stroke incidence, risk factors, and prognosis in a multiethnic, urban population.

Stroke Warning Information and Faster Treatment (SWIFT)
The Columbia University's SWIFT (Stroke Warning information and Faster Treatment) study identifies actions/barriers toward optimal "Stroke Preparedness" within a multiethnic community.

Brain Attack Surveillance in Corpus Christi (BASIC)
The BASIC project is a population-based study that examines the magnitude and etiologies of the stroke health disparity between Mexican Americans and non Hispanic whites.

Stroke Health And Risk Education (SHARE)
The SHARE study is a behavior change, educational intervention study aimed at primary stroke prevention for Mexican Americans and non Hispanic whites in Corpus Christi, Texas. SHARE is a partnership between University of Michigan researchers and the Diocese of Corpus Christi.

Hip Hop Stroke
Hip Hop Stroke is a musical multimedia stroke literacy intervention designed to raise stroke awareness and behavioral intent to call 911 for acute stroke.