Health Disparities Research in Neurological Disorders

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: ( indicates a group that can be expanded. )

• Reasons for Geographic and Racial Disparities in Stroke (REGARDS)

  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)

  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)

• 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)

• Brain Attack Surveillance in Corpus Christi (BASIC)

  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)

• Stroke Health And Risk Education (SHARE)

  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

  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)

• 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. 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)

• 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)

Below are examples of clinical trials that are particularly relevant to health disparities populations and may yield important information about effectiveness of interventions in those groups.

• Secondary Prevention of Small Subcortical Strokes (SPS3) trial
• Silent Cerebral Infarct Multi-Center Clinical Trial
• Insulin Resistance Intervention after Stroke (IRIS) trial

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. [http://www.nhlbi.nih.gov/meetings/workshops/cruise.htm]
• 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.