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.
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 opportunity for improving outcomes. NINDS supports research to better understand stroke disparities and to inform development of effective interventions in specific population groups who suffer a disproportionately higher burden of stroke.
Current NINDS-supported stroke disparities research highlights:
REGARDS (REasons for Geographic And Racial Differences in Stroke) is a large cohort study evaluating the causes of racial and geographic differences in stroke mortality and cognitive decline in the United States. Between 2003 and 2007, the study enrolled 30,239 African-American and white participants aged 45 years or older. Approximately half the participants reside in the Stroke Belt (including North Carolina, South Carolina, Georgia, Alabama, Mississippi, Tennessee, Arkansas, and Louisiana), with the remaining participants residing in the other 40 contiguous States; 42% are African-American. Medical and risk factor history were obtained by telephone interview and physical measurements done at a baseline in-home visit, including blood pressure, anthropometry, electrocardiogram, and collection of blood and urine samples. Participants are followed at 6-month intervals by telephone to assess stroke and other events. (Dr. George Howard, PI)
The Northern Manhattan Study (NOMAS) is a prospective population-based study of stroke incidence, risk factors, and prognosis in a multiethnic, urban population. Over 3,000 stroke-free individuals (63% Hispanic, 20% African-American, and 15% white residents) were enrolled between 1993 and 2001. Participants are screened annually by telephone to identify potential symptoms and events; those with positive screens are subsequently examined in person. (Drs. Ralph Sacco and Mitchell Elkind, PIs)
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)
The Brain Attack Surveillance in Corpus Christi (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. BASIC has been collecting data since January 2000 and has published over 50 papers. (Drs. Lewis Morgenstern and Lynda Lisabeth, PIs)
The Stroke Health and Risk Education (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. (Drs. Lewis Morgenstern and Devin Brown, PIs)
Hip Hop Stroke is a musical multimedia stroke literacy intervention designed to raise stroke awareness and behavioral intent to call 911 for acute stroke. The intervention is based on validated theoretical models of behavior change and targets children aged 9-12 (proximal targets) from economically-disadvantaged communities, and their parents (distal targets) through "Child Mediated Stroke Communication". Dr Williams and his research team are conducting a randomized controlled trial in New York City public schools to evaluate the effect of Hip Hop Stroke on stroke literacy and stroke-related behaviors of children and their parents. (Dr. Olajide Williams, PI)
The Columbia University's SWIFT (Stroke Warning information and Faster Treatment) study identifies actions/barriers toward optimal "Stroke Preparedness" within a multiethnic community. This study developed an educational intervention which incorporated key preparedness skills and culturally tailored messages resulting in an increased number of stroke events arriving within 3 hours of symptom onset in over 1200 individuals. (Dr. Bernadette Boden-Albala, Project PI)
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)
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)
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)
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.
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.
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.
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.
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.
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.
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. [http://www.nhlbi.nih.gov/meetings/workshops/cruise.htm]