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Five-Year Plan on Minority Health Disparities



FIVE-YEAR STRATEGIC PLAN ON MINORITY HEALTH DISPARITIES

November 16, 2001 (Revised April 2003)

TABLE OF CONTENTS
NINDS Mission/Vision Statement
Overview of the NINDS Strategy for Addressing Health Disparities
NINDS Area of Emphasis

Performance and Outcome Measures
Timeframe for Plan Implementation


NINDS MISSION/VISION STATEMENT

The mission of the NINDS is to reduce the burden of neurological disease - a burden borne by every segment of society, by people all over the world. To this end, the Institute supports and conducts research on the healthy and diseased brain, spinal cord, and peripheral nerves.



OVERVIEW OF THE NINDS STRATEGY FOR ADDRESSING HEALTH DISPARITIES

The National Institute of Neurological Disorders and Stroke (NINDS) is the lead agency for basic and clinical research focused on the brain, spinal cord, and peripheral nerves; their development, degeneration, and regeneration; and their disorders and diseases. The NINDS has scientific interests in neurological disorders as diverse as stroke, epilepsy, multiple sclerosis, head and spinal cord injuries, Alzheimer's disease and other dementias, Parkinson's disease, neurofibromatosis, muscular dystrophy, neuroAIDS, amyotrophic lateral sclerosis, and Huntington disease. Many neurological and neuromuscular disorders are chronic disorders, characterized by progressive decline in cognitive, sensory, or motor function over a long period, resulting in disability, suffering and long-term care at tremendous cost to the patient, family, and society.

The NINDS has initiated a comprehensive health disparities planning process to define research priorities and approaches for reducing the burden of neurological disease in minority populations. We will achieve reductions in minority health disparities through consultation with the extramural neuroscience community and other Federal agencies to support targeted investments in research infrastructure and funding of ten primary areas of focus. These areas include stroke, the neurological complications of HIV/AIDS, neurological complications of diabetes, treatment and management of pain, the cognitive and emotional health in children, epilepsy, injury to the developing brain, expanding research capacity and training among minority institutions and researchers, improving access to and dissemination of research information to the public, and promoting adherence to inclusion policies for minority participation in clinical research.

The NINDS has developed collaborative partnerships and networks throughout the nation and world to investigate health problems and conduct research on neurological diseases and disorders. Our planning process will identify the most effective approaches to enhance resource sharing and collaboration between researchers at minority institutions, Federal and non-Federal research institutions, and minority communities. We will identify innovative strategies to strengthen the inclusion of minorities in clinical studies. We will develop more effective methods to promote culturally appropriate prevention, treatment and other intervention studies in underserved minority populations. We will provide leadership and training to attract and retain investigators committed to research on health disparities. Finally, we will develop strategies for educational outreach to foster improved dissemination of research-based information to minority communities.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



NINDS AREAS OF EMPHASIS

The NINDS Five-year Strategic Plan on Minority Health Disparities will focus on ten areas of research of which seven are condition specific and three are general, cross-cutting the specific conditions. The condition specific areas are:

  • Area of Focus I: Stroke (brain attack)
  • Area of Focus II: HIV Associated Neurological Diseases
  • Area of Focus III: Neurological Complications of Diabetes
  • Area of Focus IV: Health Disparities in Treatment and Management of Chronic Pain Disorders
  • Area of Focus V: Health Disparities in Cognitive and Emotional Health of Children
  • Area of Focus VI: Epilepsy and Status Epilepticus
  • Area of Focus VII: Injury to the Developing Brain

The general, cross-cutting areas are:

  • Area of Focus VIII: Research Capacity Building and Enhanced Training among Minority Institutions and Researchers
  • Area of Focus IX: Dissemination of Public Information/Outreach
  • Area of Focus X: Inclusion Policies/Activities for Minorities in Clinical Research.

AREA OF FOCUS I: Stroke (brain attack)

Stroke is the third leading cause of death in the United States, killing approximately 150,000 Americans every year. Over 700,000 new or recurrent strokes occur each year, leaving approximately 4 million Americans living with neurological deficits due to stroke. The risk for suffering a stroke and the associated mortality increase with age, thus the frequency of stroke is expected to increase substantially with the aging of the American population.

The risk for stroke also varies among ethnic groups. The incidence of stroke is disproportionately high in the African American population, occurs at younger ages, and the mortality rate is nearly 80% greater than in Caucasians. In Hispanic Americans, the incidence of subarachnoid hemorrhage is approximately two and a half times that of Caucasian Americans, and the death rate is significantly higher at younger ages. Finally, ethnic and racial minorities are the fastest growing segments of the population in several of the largest states; by the year 2020, it is anticipated that minorities will outnumber Caucasian Americans in those states.

AREA OF FOCUS II: HIV-Associated Neurological Disease

HIV infection/AIDS is a leading cause of death for young adults, and approximately 375,000 have died from the disease in the United States. It is estimated that 650,000 to 900,000 Americans are infected with HIV, 15%-30% of whom will develop some type of neurological disorder in the course of their illness.

AIDS affects minorities disproportionately. Although minorities constitute approximately 30% of the total population, they account for nearly 70% of all AIDS cases. While the number of new (incident) cases is decreasing in some populations, it is increasing among African Americans, especially homosexual men. Of reported cases in women and children, more than 75% are minorities. Despite the reality of these data, the natural history of this infection in minorities has not been established. For example, the interaction between co-morbid conditions/pre-existing ones and HIV infection has not been documented although it is well known that minorities tend to have been exposed to or carry a higher number of infectious agents when compared to Caucasians. This knowledge has immediate and direct repercussions in the diagnosis, prognosis, and treatment of minority patients infected with HIV.

AREA OF FOCUS III: Neurological Complications of Diabetes

Diabetes is the seventh leading cause of death in the United States, affecting nearly 16 million Americans. Compared to Caucasians, the prevalence of diabetes in Hispanic Americans and in African Americans is approximately 50% and 70% higher, respectively. Among Native Americans and Alaskan Natives, the prevalence of diabetes is more than twice that of Caucasian Americans, being the highest in the world among the Pima tribe. Thus, the burden of diabetic complications, including sensori-motor peripheral neuropathy is disproportional in minority populations. Also, there is evidence that lower extremity amputations, which to some extent reflect neuropathology, occur more frequently among diabetics who are minorities.

AREA OF FOCUS IV: Health Disparities in Treatment and Management of Chronic Pain Disorders

Chronic pain disorders, such as migraine headaches, may be more prevalent in minority populations, or present special problems when considering therapeutic approaches. Further, recent studies indicate inadequate treatment for pain in minority populations, and ethnic differences in the perception of pain. In order to stimulate research, NINDS as a lead Institute for the Pain Research Consortium at NIH, will direct research efforts to identify treatment and management strategies for chronic pain conditions in diverse populations. This initiative is of particular interest to NINDS, and potentially to members of the NIH Pain Research Consortium, the NIH Intramural community, as well as to potential partners in pharmaceutical and biotechnology industries.

AREA OF FOCUS V: Health Disparities in Cognitive and Emotional Health of Children

Minority children in urban centers are at increased risk for adverse health outcomes due to chronic exposure to negative environmental factors including toxic substances, violent neighborhoods, and impoverished educational facilities. A large percentage of these children have had documented exposures to toxins (e.g., lead), and yet they have not received adequate follow-up care despite well-known impairments linked to such exposures.

In urban minority children, there is an issue of added vulnerability: it is well documented that a large percentage of minority mothers, especially African American women, give birth to low and very low birth weight babies, often associated with premature labor. As mentioned in potential Area of Focus VII, these conditions are often associated with injury to the developing brain, which will likely be compounded by the insult of environmental toxins.

Neglect, domestic and community violence are also important factors challenging the normal cognitive and emotional development of urban minority children. Symptoms of anxiety and stress similar to those associated with Post Traumatic Stress Disorder have been diagnosed with increasing frequency in these children.

AREA OF FOCUS VI: Epilepsy and Status Epilepticus

Epilepsy is characterized by recurrent unprovoked seizures. According to studies in New York, the incidence of epilepsy in the African American community in Harlem is 50% higher than in the Caucasian population. Reasons for this disparity have been attributed to socioeconomic differences and other factors including nutrition, exposure to violence, reduced health infrastructure, and altered access to medical care. However, at an HMO in Houston, incident cases of epilepsy seemed higher in Hispanic and African American children. Recruitment from the same HMO would appear to control for access to care and socioeconomic status. Similarly, in Atlanta, African American children have a higher lifetime prevalence compared to Caucasian children under the age of 10. The lifetime prevalence in these studies is probably closest to demonstrating real differences in incidence. In the elderly, the incidence of all seizures by age 70 was about 25% in the African American community of Harlem compared to 10% in Caucasians. Age specific mortality attributable to seizures/epilepsy and overall mortality is also considerably higher in African American than in Caucasian populations. The potential roles of genetics or specific gene-environment interactions in the incidence of epilepsy have not been determined.

Status epilepticus, a serious condition characterized by acute continuous or repetitive seizures, is a major medical and neurological emergency in the United States, killing more than 50,000 Americans each year. Approximately 260,000 new or recurrent cases of status epilepticus occur each year, and approximately 8 percent of patients in coma manifest non-convulsive status epilepticus. The elderly have the highest incidence of status epilepticus, which is also associated with increased mortality. Thus, the frequency of status epilepticus and its mortality is expected to increase significantly with the aging of the American population.

The incidence of status epilepticus is disproportionately higher in African Americans across the entire age spectrum. In the elderly, it is more than four times the incidence of the general population. Moreover, recent findings suggest that there is a significantly higher genetic predisposition for African Americans to develop status epilepticus in comparison to non-minority populations.

AREA OF FOCUS VII: Injury to the Developing Brain

Injury to the pre- and postnatal brain is a leading cause of death and morbidity in children, especially injury induced by adverse fetal/perinatal environments and trauma. In the Child Health USA 1999 publication, the Department of Health and Human Services Health Resources and Services Administration (HRSA) reported that infant mortality rate, low birth weight, and very low birth weight (VLBW) infant rates are twice as high in African American infants as that of Caucasian infants. These VLBW infants are at the highest risk for physical developmental disabilities (learning and behavioral problems, motor disabilities-cerebral palsy, mental retardation) and death. In addition, certain types of traumatic injury in infancy appear to be higher in minority populations. However, the information available is insufficient to adequately identify the causes of these injuries and the subpopulations of infants at greatest risk of sustaining these injuries.

AREA OF FOCUS VIII: Research Capacity Building and Enhanced Training among Institutions and Researchers

The NINDS will continue its strategic plans to promote racial and ethnic diversity in the scientific and technology workforce. To foster an improved health status and reduce the burden of neurological disease experienced by minority Americans, the NINDS will provide programmatic assistance to minority researchers and institutions to develop and sustain basic, translational, and clinical neuroscience research programs. Support for these initiatives is recognition of the contributions this segment of the extramural community has made to advancing scientific understanding, educating and preparing minority research and health professionals, and delivering research benefits to underserved communities.

AREA OF FOCUS IX: Dissemination of Public Information Outreach

NINDS outreach activities will focus on the dissemination of up-to-date health and research-related information to minority communities and to health professionals and organizations. The information provided is broad ranging including printed and electronic materials and brochures, professional exhibits at scientific meetings, conferences and workshops and other direct communications with the extramural and intramural community.

AREA OF FOCUS X: Inclusion Policies/Activities for Minorities in Clinical Research

The NINDS has had excellent success in its compliance with NIH policies to include women and minorities in clinical research. Enrollment data and tracking of minorities and their subpopulations are updated annually.

Public Comment in the Development of the Health Disparities Plan

The NINDS 5-year Strategic Plan on Minority Health Disparities was developed in consultation and collaboration with intramural and extramural researchers (minority and majority), advocacy groups, scientific societies and other organizations. The advice and guidance received from the extramural neuroscience community identified 10 areas of research focus. A working draft of the strategic plan was published for 60 days on the NINDS Website and mailed to a variety of interests groups and voluntary organizations for public comment. The final draft was presented to the National Advisory Neurological Disorders and Stroke Council and submitted to the Trans-NIH Group on Implementation of Minority Health Disparities.

HEALTH DISPARITIES ACTION PLAN: Current/Future Programs and Measures

Our health disparities planning activities are underway and will establish the research priorities, objectives and strategies we will employ to reduce the burden of neurological disease in minority populations. Our planning process will consider the following proposed goals and action plans over the next several years:


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



AREA OF FOCUS I: Stroke (brain attack)

Ongoing Programs: The NINDS is supporting studies on the epidemiology, etiology, pathophysiology, and secondary prevention of stroke in minority populations.

Prevention/Primary Intervention:

  • Stroke Surveillance in a Biethnic Community in Southern Texas
  • Stroke Incidence and Risks Factors in a Tri-Ethnic Region During a Four-year Period in Northern Manhattan
  • Hemorrhagic and Ischemic Stroke among Blacks and Whites in a Metropolitan Population
  • Echocardiographic Stroke Predictors in a Tri-Ethnic Community
  • Etiology of Geographic and Racial Differences in Stroke
  • Warfarin vs. Aspirin in Reduced Ejection Fraction-CLIN
  • Warfarin vs. Aspirin in Reduced Ejection Fraction-STAT
  • Genetic/Environment Risk Factors for Hemorrhagic Stroke
  • Family Study of Stroke Risk and Carotid Atherosclerosis
  • Functional Genomics of Arterial Thrombosis

Secondary/Tertiary Intervention:

  • Acute Brain Attack Research Program
    • Established by Intramural NINDS at Suburban Hospital.
    • Using imaging as a primary research tool, and testing therapeutic interventions, the program includes a NINDS 24-hour stroke team providing state-of-the-art, comprehensive care to stroke patients
    • The program has been announced in local ABC Radio affiliates, one of them (WJZW-FM) with substantial urban African American listeners
  • Secondary Prevention in Small Subcortical Strokes
    • A small pilot trial on subcortical strokes, also know as lacunar infarcts, in Mexican-American subjects
  • African-American Antiplatelet Stroke Prevention Study
    • Includes significant community outreach and education activities

Recent Programs and Progress to Date:

Goal 1: To establish the magnitude of the disparity and the nature of the contributing factors

(a) Workshop On Pediatric Stroke: Development of Strategies for Prevention.

In September 2000, this workshop convened experts in pediatric stroke and sickle cell anemia to review current knowledge and propose strategies to address this significant health disparity in minority children. Conference participants discussed means to stimulate research using genetic approaches to extend our knowledge of stroke, including the development of projects and infrastructure to support them. The interaction between genes and environmental risk factors was emphasized as well as the role of this interaction in minority populations.

Report of the NINDS Stroke Workshop on Perinatal and Childhood Stroke

(b) Workshop on Racial/Ethnic Disparities in Stroke.

In November 2002, this workshop convened experts in stroke, epidemiology, and health disparities research to focus on the definition of race, review current knowledge and the nature of contributing factors (especially for stroke in young individuals), and propose strategies for addressing health disparities and evaluation of outcomes. Topics included:

  • Temporal Trends in Disparities in Stroke Incidence, Mortality, and Quality of Life
  • Disparities in Stroke Risk Factors and Mechanisms
  • Access to Health Care/Quality of Care
  • Genetics and Vascular Biology
  • Design of Clinical Trials
  • Bridges to the Community: Assuring Ethical Conduct of Studies and Data Integrity
  • Primary and Secondary Prevention
  • Acute Stroke Treatment
  • Rehabilitation/Outcomes

The panel provided the NINDS with recommendations for advancing stroke disparities research. Some of these recommendations include: (i) expanding population-based studies to measure temporal trends in stroke incidence, prevalence rates, and outcomes in racial and ethnic subgroups; (ii) investigating the inter-relationships between race and ethnicity, risk factors and stroke mechanisms; (iii) understanding the effects of how inadequate medical insurance, the primary care physician and acculturation patterns affect access to health care; (iv) expanding clinical trials to include epidemiological and health service components; (v) evaluating the barriers to adherence to stroke prevention strategies; and (vi) increasing the pool of minority investigators.

A final report with more detail on the recommendations and research priorities is in development. The report will be available to the public on this website as well as the NINDS website. It is anticipated that program announcements (PAs) and requests for applications (RFAs) targeted to the prioritized areas will be forthcoming.

Goal 2: To develop, pilot and evaluate culturally appropriate prevention-interventions in minority communities

(a) Stroke and Cerebrovascular Disease Prevention-Intervention Research Program.

In FY03, the NINDS, in collaboration with NHLBI and NCRR, will fund an "exploratory" Stroke and Cerebrovascular Disease Prevention/Intervention Research Program at the Morehouse School of Medicine to augment and strengthen the research capabilities to reduce the burden of stroke in populations historically at increased risk from this disease. The primary goals of the Stroke and Cerebrovascular Disease Prevention/Intervention Research Program are to:

  1. Develop sustainable, replicable, and culturally appropriate prevention and/or intervention research programs targeted to minority populations designed to decrease the incidence and prevalence of stroke;
  2. Strengthen basic, clinical and translational research capacity at minority medical schools committed to addressing health disparities related to stroke;
  3. Enhance opportunities for multidisciplinary research collaborations between minority institutions and institutions with established programs in stroke research; and
  4. Increase the role of research in maintaining a vigorous and stimulating academic milieu that will inspire students and fellows to pursue careers in stroke research and other vascular diseases.

If the model program is successful, the NINDS plans to develop and pilot similar programs throughout the extramural community in the areas of research priority specified in our health disparities strategic plan.

Within the first 2 years of the project, the first phase of the 6-year program will begin with the establishment of the infrastructure and the key collaborations with recognized external programs in stroke. Longer-term performance measures include the submission and funding of high-quality applications for program-based research projects, and the number of minority fellows or students involved in Center activities.

Proposed New Directions in Stroke

Goal 1: To establish the magnitude of the disparity and the nature of the contributing factors

(a) Stroke Registry for Native Alaskans

The NINDS is working with investigators at the Alaska Native Medical Center to develop a cooperative agreement stroke registry for Native Alaskans. The registry will allow trend determination of incidence, prevalence, distribution, and risk factors pertinent to this population. Moreover, the registry is envisioned to provide data that could be used to improve the quality of stroke care provided to Alaska Natives. If successful, the registry may serve as a model for adoption by Native American tribal entities within the contiguous 48 states to more fully characterize the occurrence of stroke and identify culturally acceptable stroke prevention and interventions activities to reduce the burden of disease.

An application is anticipated in FY 2003 with funding by FY 2004. Longer-term performance measures for this initiative include development of a model registry, funded application for a national registry, and the number of submitted and funded applications that use data from either the model registry or, ultimately, a national registry.

Goal 2: To enhance acute stroke research and care in centers serving predominantly minority populations.

(a) Acute Brain Attack Research Program in the Baltimore-Washington Area.

The NINDS will explore the feasibility of replicating its research-care program at Suburban Hospital in other medical facilities throughout the Baltimore-Washington metropolitan area targeting those serving predominantly minority populations. Although the project is focused on acute stroke research, it represents a base from which to conduct a study of the epidemiology of stroke, barriers to acute stroke care, and quality of care within the specific racial/ethnic communities being served by the hospital. This information, in turn, can be used to tailor stroke prevention and intervention programs, including stroke awareness/education campaigns, to those communities.

The model being proposed has the potential for export to other racial/ethnic communities, but further studies of its application in those communities is essential to establish its generalizability. Thus, a similar project based on an established cohort of African Americans in Jackson, MS (an agrarian Southern U.S. community in the Stroke Belt) is being explored. Stroke Belt communities may have different challenges to successful stroke prevention and intervention activities.

A near-term measure of the effectiveness of this initiative is the funding of applications that will develop and evaluation stroke prevention/intervention activities that are based on observed patterns within the specific racial/ethnic community.

Goal 3: To further disseminate information on stroke, including preventive measures, warning signs, and the urgency of immediate care to minority populations.

(a) National Public Education Campaign on Stroke

This initiative is intended to develop public education campaigns, specifically targeted towards racial/ethnic communities, relating to stroke awareness to prevent stroke and improve the timeliness of acute stroke care. Both stand-alone projects and those that are integrated into a broader stroke prevention/intervention program will be explored.

Near-term performance measures include receipt and funding of applications to develop culturally appropriate, community-specific programs on stroke awareness.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



AREA OF FOCUS II: HIV-Associated Neurological Disease

Ongoing Programs: The NINDS is supporting studies on the epidemiology, etiology, pathophysiology, and secondary prevention of NeuroAIDS in minority populations. In addition, the NINDS is supporting programs to enhance the availability of racially/ethnically diverse tissue resources as well as multiple clinical trials to develop effective HIV treatments.

Prevention/Primary Intervention:

  • Specialized Neuroscience Research Program (SNRP) on HIV and the Nervous System at the University of Puerto Rico
    • Establishing a cohort of Hispanic women, children and men with detailed neurological, neurophysiological, virological and immunological parameters to determine the major host and viral factors responsible for disease pathogenesis
  • SNRP on HIV and the Nervous System at the University of Hawaii
    • A study on the prevalence and incidence of dementia in HIV seropositive individuals 50 years of age or more compared with younger HIV seropositive individuals
    • Examining the role of macrophage in AIDS dementia
  • National NeuroAIDS Tissue Consortium (NNTC)
    • A national resource for the provision of well-characterized tissues and fluids from HIV-infected patients (including minority and disadvantaged populations) to NeuroAIDS investigators
    • Sites include the Manhattan HIV Brain Bank, the California NeuroAIDS Tissue Network, and the Texas HIV Brain Bank
  • Studies of neurocognitive function, HIV load and surrogate markers in an ethnically, racially and gender diverse cohort
  • Neurological AIDS Research Consortium (NARC) supports investigations into the:
    • Incidence, prevalence and natural history of HIV related neuropathy and neuropsychological disorders;
    • Analysis of physiologic and morphologic characterization of distal sensory neuropathy in HIV;
    • Assessment of genetic polymorphisms seeking evidence for genetic risks predisposing to HIV neurologic complications; and
    • Development of investigations of the presentation of NeuroAIDS disorders in developing countries
  • CNS HIV Antiretroviral Therapy Effects Research (CHARTER) Sub-project will involve race/ethnicity-specific analyses of the incidence and severity of neurological complications of HIV infection in the setting of anti-retroviral treatment. Three issues will be addressed, including:
    • What is the incidence of neurological complications following HIV infection in individuals receiving anti-retroviral treatment?
    • What types of neurological complications arise during anti-retroviral treatment and what is their severity?
    • How does this compare to individuals not receiving anti-retroviral treatment?

Secondary and Teritary Intervention:

  • Neurological AIDS Research Consortium (NARC) supports investigations and treatments of the HIV infection on the nervous system including:
    • Testing the safety and efficacy of transdermal selegiline for HIV-associated cognitive disorder;
    • Testing the virologic, immunologic and pharmacologic manifestations of HIV in the CSF compartment during anti-retroviral treatment;
    • Studying Acetyl L-carnitine for treatment of dideoxynucleoside induced painful neuropathy in HIV infection; and
    • Measuring the safety, tolerability and analgesic properties of Prosaptide for HIV-associated painful peripheral neuropathy

Recent Programs and Progress To-Date

Goal 1: To establish the magnitude of the disparity and the nature of the contributing factors

(a) Planning panel on NeuroAIDS in minority populations

In July 2001, this workshop convened experts in NeuroAIDS to identify what additional policies and programs the NINDS can implement to address the issue of health disparities with respect to the neurological complications of HIV/AIDS.

NINDS Health Disparities Planning Panel on NeuroAIDS in Minority Populations: Meeting Report

The Panel developed recommendations and priorities in the areas of Research, Research Capacity, and Outreach. The highest priority has been assigned to Research activities to understand the natural history and clinical course of neurological complications of HIV/AIDS among minorities. Areas of research include:

  • Incidence and prevalence of the array of neurological manifestations, and associated risk factors;
  • Disease progression (or conversely, disease stabilization) and associated risk factors, e.g., genetics, co-infection;
  • Treatment: array of therapies, adherence to recommended therapies, and response to therapies.

It is recognized that as a prelude to some of these studies, it may be necessary to develop screening and assessment tools for identifying neurological complications of AIDS within racial/ethnic groups (i.e., normalization instruments to specific populations), and identification of alternative means of identifying neurological sequelae of AIDS (vis-à-vis neuropsychological testing), e.g., MRI.

Proposed New Directions in HIV-Associated Neurological Disease

Goal 1: To establish the magnitude of the disparity and the nature of the contributing factors

(a) Program Announcement for Epidemiological Studies of NeuroAIDS in minority populations

Resulting from the planning panel on NeuroAIDS in minority populations (above), a program announcement with set aside (PAS) is in planning for studies that will address the research priority areas. This is in accord with the near-term performance measure for this Area of Focus. The PAS will recognize that a cost-effective strategy is for the proposed studies to utilize existing HIV/AIDS cohorts that are well characterized. These studies may involve race/ethnicity specific analyses or may require enhancement of the cohorts with additional minority participants to ensure sufficient sample sizes for meaningful analyses. Foreign cohorts that reflect the racial/ethnic diversity within the U.S. may also be considered since treatment is often less prevalent in developing countries, providing information on the natural history of neurological complications among minority populations.

The PAS will accommodate activities to facilitate the natural history/clinical course studies, notably the normalization of neuropsychological instruments to minority populations. Neuropsychological testing has been developed with little or no participation of minority populations, and norms established for the Western world have been used without adjustments to racial/ethnic minorities. These tests serve as a measure of HIV neurological involvement and are used to monitor NeuroAIDS treatment success. The fairness of using such instruments with minorities has been questioned, and their accuracy in measuring mild cognitive impairment in these populations is controversial. The NINDS will encourage the development of culturally sensitive neuropsychological instruments and/or normative data in defined racial/ethnic communities or neighborhoods with representative minority populations (catchment areas).

The longer-term performance measures for the Research phase of the neuroAIDS initiative include the number of submitted high-quality applications in the targeted areas, the number of funded applications, and the products resulting from funded projects (e.g., publications, model intervention).


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



AREA OF FOCUS III: Neurological Complications of Diabetes

Ongoing Programs: Current institute activities related to minority health disparities include a clinical-epidemiological study of the disorder in a Native American population. This is the first study of its kind.

  • Diabetic Neuropathy Study including a large Native American population in northern Minnesota.

Proposed New Directions in Neurological Complications of Diabetes:

Goal 1: To establish the magnitude of the disparity and the nature of the contributing factors and outcomes.

(a) Race/Ethnic Disparities in the Incidence of Diabetes Complications.

The NINDS will continue to co-fund research programs with NIDDK that are focused on sensori-motor neuropathy, its frequency, natural history, and outcomes (lower extremity amputation).

(b) Diabetic Neuropathy on the National Health and Nutrition Examination Survey.

The on-going National Health and Nutrition Examination Survey (NHANES), National Center for Health Statistics (NCHS), recently began using a simple measure of neuropathy (monofilament), and is enrolling 5000 new cases per year. These cross-sectional evaluations are uniquely suited for studying major outcomes related to neuropathy (ulcer, amputation, mortality). In three or four years that sample (15,000 - 20,000) will be large enough to generate normative data by age, race, and sex. Thus, the NINDS could use an inter-agency agreement to collaborate with the NCHS to include more precise measures of neuropathy to be used in the examination protocol.

(c) Analysis of Existing Diabetic Studies Toward Neurological Endpoints.

Extensive cohorts of diabetic patients exist and are well characterized in the scientific literature. The NINDS will support the analysis of existing data sets to further elucidate the frequency of sensori-motor neuropathy, the nature of its predictors, prognostic factors, and interventions to prevent or delay the development of neuropathy.

(d) Minority Cohorts in Established Diabetes Protocols.

Longitudinal studies of diabetes are currently underway, some with substantial minority representation. The NINDS will encourage these protocols to use innovative methods to recruit and retain research participants, to differentiate the types of neuropathy occurring with diabetes, to monitor the progression of disease, and to define outcomes of the neuropathy itself.

(e) Specialized Center Grant Cooperative Agreement Programs on the Neurological Complications of Diabetes in Minorities.

The NINDS will support Specialized Center Grant Cooperative Agreement programs at minority institutions to study neurological complications of diabetes in local populations and to strengthen the research capacity in those institutions.

Near-term performance measures for these activities include those indicating establishment of the necessary structure, for example, development and release of PAs/RFAs in the target areas. Longer-term measures include number of high-quality applications submitted on the targeted areas and number of those applications funded.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



AREA OF FOCUS IV: Health Disparities in Treatment and Management of Chronic Pain Disorders

Recent Programs and Progress-to-Date:

Goal 1: To develop treatment and management strategies for chronic pain in diverse populations.

(a) The NINDS supported a symposium, held in conjunction with the American Pain Society Annual Meeting in April 2001, focused on perceptual and sensory differences of pain in diverse populations, as well as drug response and drug availability in these populations.

To implement the recommendations obtained at the symposium, the NINDS plans to release a Program Announcement in FY04 to solicit research applications that address health disparities in treatment and management of chronic pain disorders.

(b) The NINDS will focus on studies to identify and assess barriers influencing effective chronic pain management and treatment in minority populations. In this effort, we will determine the nature and extent of disparities in the delivery of pain treatment in target populations.

  • The NINDS has recently funded a research program assessing "Ethnic Differences in Responses to Painful Stimuli" - To further elucidate the nature and mechanisms of ethnic differences in pain responses by investigating perceptual and physiological responses to experimental pain stimuli in African Americans, Hispanic Americans and non-Hispanic whites.

Proposed New Directions in Treatment and Management of Chronic Pain Disorders:

Goal 1: To develop treatment and management strategies for chronic pain in diverse populations.

(a) The NINDS will focus on studies to identify racial/ethnic differences in pain perception and processing by addressing the incidence, severity, and consequences of pain in the general population, and in specific disease states.

(b) The NINDS will focus on studies to identify new diagnostic tools for different pain mechanisms, and objective measures of analgesic drug action. Key elements in this effort will be research to understand differences in response to analgesic drugs in diverse populations; encourage development of a quantitative sensory testing battery for pain patients; and imaging markers of analgesia and analgesic mechanisms.

Near-term performance measures for these activities include those indicating establishment of the necessary structure, for example, development and release of PAs/RFAs in the target areas. Longer-term measures include number of high-quality applications submitted on the targeted areas and number of those applications funded.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



AREA OF FOCUS V: Health Disparities in Cognitive and Emotional Health of Children

Recent Programs and Progress-to-Date:

Goal 1: To assess the complex and multifaceted issues associated with disparities in cognitive & emotional health of minority children.

(a) Workshop on the Cognitive & Emotional Health of Minority Children.

In July 2001, this workshop of national experts discussed the concept of "normal" cognitive and emotional development in children, and how to assess the defined "normality". This working group also focused on environmental and pharmacological effects as well as the result of neglect and other adverse conditions on the cognitive and emotional health of children resulting in recommendations on how to promote the normal development of all urban minority children.

Health Disparities Working Group Meeting: Cognitive and Emotional Health in Minority Children

The working group concluded that the overarching need is for the support of research on the development of neutral and/or culturally sensitive assessment tools, community based research, and multi-site longitudinal studies. Specific recommendations include:

  1. Encourage the establishment of multidisciplinary working groups to help frame research questions and gather pilot data.
  2. Develop new assessment tools that would be sensitive to the following factors: culture, socioeconomic status, gender, rural vs. urban location, language, and literacy.
  3. Identify and implement the use of (appropriate) biological markers.
  4. Conduct longitudinal multi-site studies.
  5. Develop, implement, and provide access to multiple intervention strategies, which are preventative, remedial, culturally relevant and therapeutically effective.
  6. Establish a board of advisors to provide oversight for legal, political and ethical issues.
  7. Establish educational opportunities to increase cultural diversity of future health professionals, researchers, and their staff.
  8. Fund basic neuroscience research to study the effects of post-traumatic stress on the brain, the changes that occur in the brain with puberty (and early onset of puberty), and the impact of environmental contaminants on brain function.
  9. Encourage multi-NIH Institutes initiatives and multi-agency initiatives (including SAMHSA, HRSA).

Near-term performance measures are development and release of PAs/RFAs targeted on the priority areas. Longer-term measures include number of high-quality applications submitted on the targeted areas and number of those applications funded.

(b) New York Academy of Sciences Conference " Roots of Mental Illness in Children"

In March 2003, the NINDS co-funded a New York Academy of Sciences conference with the National Institute of Mental Health (NIMH) to build bridges between animal research and clinical approaches for studying mental health and disorders in children and adolescents. The conference focused on the common symptoms or dimensions, observed in several childhood disorders that can help us conceptualize special features of behavioral and neural development that together with the impact of environmental factors confer susceptibility or resilience to cognitive and emotional dysfunction during early stages of development.

(c) Program Announcement on Methodology and Measurement in the Behavioral and Social Sciences

In March 2002, the NINDS joined the NIH Office of Behavioral and Social Sciences Research (OBSSR) and 14 other NIH Institutes in releasing a Program Announcement (PA-02-072) that solicits research grant applications on methodology and measurements in the behavioral and social sciences. In this PA, the participating Institutes and Centers particularly encouraged research that addresses methodology and measurement issues in diverse populations including instrument design, calibration and refinement to study culture, self-identification of race-ethnicity as well as health disparities.

(d) Prospective Study of Chronic Kidney Disease in Children

In November 2002, the NINDS partnered with the National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK) and the National Institute of Child Health and Human Development (NICHD) to release an RFA (RFA-DK-03-012) to conduct a prospective epidemiological study of children with chronic kidney disease. The cohort of 600 children with mild to impaired kidney function will be recruited from a diverse population sample. The primary goals of the study are to determine the risk factors for decline in renal function; the incidence of, and risk factors for, impaired neurocognitive development and function.

Longer-term measures include number of high-quality applications submitted on the targeted areas and number of those applications funded.

Proposed New Directions in Cognitive and Emotional Health of Children:

Goal 1: To improve current understanding of the interactions between chronic exposure to adverse environmental factors and the cognitive and emotional development of children.

(a) The NINDS will support studies assessing factors (prenatal, perinatal, environmental) influencing the cognitive and emotional development in minority children. The focus of these studies will be to characterize the relationship between health disparities, normal and dysfunctional cognitive development and functioning, including issues of prevalence, severity of condition, risk factors, cognitive patterns that lead to life-long health problems in minority groups.

(b) The NINDS will support research on the long-term effects of "early experiences" (in utero, perinatal) on brain development and function. The goals of these studies will be to begin a community-based longitudinal study of minority children health and to develop collaborative partnerships with Federal agencies to join in the development and support of the study.

(c) The NINDS will encourage grantees to expand their ongoing cognitive neuroscience programs and explore new research projects that characterize the relationship between health disparities and the normal and dysfunctional cognitive and emotional development of minority children.

Near-term performance measures will focus on the establishment of the necessary structure to support the above lines of research: PAs/RFAs, collaborative partnerships, with longer-term measures focused on number of studies funded.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



AREA OF FOCUS VI: Epilepsy and Status Epilepticus

Ongoing Programs: The NINDS is supporting studies in the following areas:

  • Epilepsy Clinical Research Program - To increase our knowledge of the pharmacokinetics, pharmacodynamics, and pharmacoepidemiology of anti-epileptic drug use in the elderly.
  • Multi-center Study of Idiopathic Generalized Epilepsy - To identify the loci involved in the expression of idiopathic generalized epilepsy and investigate their interactions, including testing the differences in specific candidate loci between Caucasians and non-Caucasians.
  • Medical College of Virginia Epilepsy Research Center - A population-based study to investigate Status Epilepticus in minority populations.
  • A Pilot Study of Neurocysticercosis Treatment - A collaboration between Columbia University and the University of Cuenca, Ecuador, to determine optimal treatment of acute Neurocysticercosis, a putative cause of epilepsy.

Recent Programs and Progress-to-Date:

Goal 1: To establish the magnitude of the disparity in epilepsy and the nature of contributing factors.

(a) Planning Panel for National Workshop on Minorities and Epilepsy.

A panel of experts was convened on November 13, 2002 to define research priorities and approaches for addressing epilepsy and status epilepticus in minority populations. The panel examined the current state of knowledge regarding disparities in the areas of: epidemiology, clinical management and outcomes, the role of stigma, and economics, and also for specific populations including Native Americans, women, and urban (inner city) residents. The overall conclusion was that more information on disparities in epilepsy and status epilepticus is needed before proper interventions or campaigns can be developed. Research is needed generally to improve knowledge about the epidemiology, issues in treatment and clinical management, outcomes, and barriers such as stigma. In addition, a conceptual framework is needed on which further studies would be designed.

Health Disparities in Epilepsy Planning Panel Summary

The findings from this Panel are being used to develop a set of research priorities and approaches for addressing epilepsy and status epilepticus in minority populations. An RFA is anticipated in FY 2004 that will solicit applications to address the key gaps in knowledge relating to the epidemiology, clinical management or treatment, and the role of perceptions in prevention/intervention efforts.

Proposed New Directions in Epilepsy and Status Epilepticus:

Goal 1: To establish the magnitude of the disparity in epilepsy and status epilepticus: occurrence and treatment, and the nature of contributing factors.

(a) Epilepsy and Status Epilepticus in Minority Populations.

The NINDS will stimulate research focused on the frequency of epilepsy and status epilepticus, its risk factors, clinical manifestations, natural history and prognosis in diverse minority populations. Research on specific populations will be encouraged, for example, in defined racial/ethnic communities or neighborhoods with representative minority populations (catchment areas). Research will also be sought on barriers to appropriate clinical management of the disease experienced by minority populations.

(b) Secondary Epilepsy in Racial/Ethnic Minorities.

Research indicates that African Americans and Hispanics are at increased risk for stroke (especially at younger ages), while Native and African Americans are at higher risk for brain injury (due to accidents, firearms, low birth weight). Both conditions are known to be associated with epilepsy. The NINDS will support research on factors related to differential risk for secondary epilepsy, prognosis, and intractable seizures.

(c) Pathophysiology of Epilepsy and Status Epilepticus in Minorities.

The NINDS will support studies to identify factors essential to the understanding of the basic mechanisms underlying these conditions in minority populations. These factors include, but are not limited to cerebral vascular disease, genetics, sickle cell anemia, and alcoholism.

Goal 2: To develop prevention and intervention programs to prevent and improve the clinical management of epilepsy and status epilepticus among minority populations.

Near-term performance measures for these activities include those indicating establishment of the necessary structure, for example, development and release of PAs/RFAs in the target areas. Longer-term measures include number of high-quality applications submitted on the targeted areas and number of those applications funded.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



AREA OF FOCUS VII: Injury to the Developing Brain

Ongoing Programs:The NINDS is supporting studies in the following areas:

  • Accidental and Non-accidental Pediatric Brain Injury
  • Neuropsychological Outcomes of Neonatal Brain Injuries
  • Randomized Indomethacin Intraventricular Hemorrhage Prevention Trial
  • Beneficial Effects of Antenatal Magnesium (BEAM) is a six-year randomized trial testing the hypothesis that intravenous magnesium, given prophylactically to women who are about to deliver prematurely, will reduce the risk of infant mortality and moderate to severe cerebral palsy. This study is being conducted through the thirteen NICHD Maternal-Fetal Medicine Units Network around the country, representing a racially diverse population. Together, these centers are responsible for about 70,000 births per year.

Proposed New Directions in Injury to the Developing Brain:

Goal 1: To study the effects of biological and environmental factors in the immediate and long term outcomes of age-dependent brain injury.

(a) Injury and Outcomes to the Developing Brain Workshop.

The NINDS will convene national experts in the field of infant development and brain injury to identify key factors impacting on the frequency of perinatal, neonatal, and infant brain injury in order to plan a more comprehensive initiative to address those factors. The workshop will also identify potential factors affecting the outcome of sustained injuries to the developing brain, especially those amenable to prevention strategies. Special emphasis will be placed on permanent sequelae of repeated brain injury during the first few years of life. The recommendations from this workshop will assist the NINDS in setting research priorities and approaches to investigate potential interventions to improve the outcome of pediatric brain injuries in minority populations.

(b) Supplements to Existing Research on Developmental Brain Injury.

The NINDS will make available competitive supplements for additional analysis on existing data pertinent to injury of the developing brain from birth until late infancy. Also, supplements will be used to recruit additional minority participants to existing studies to increase the statistical power of on-going studies, and to make the results generalizable to minority populations.

As previously noted for other goals involving workshops, the primary performance measure is a set of research priorities and the associated PAs/RFAs. Subsequent measures of performance will focus on the submission and funding of high-quality applications in the targeted areas.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



AREA OF FOCUS VIII: Research Capacity Building and Enhanced Training among Minority Institutions and Researchers

Ongoing Programs: The NINDS supports the following:

  • Developmental Neuroscience Research Program at the Morehouse School of Medicine is a Specialized Center Cooperative Agreement Program co-supported by the National Center on Minority Health and Health Disparities (NCMHD) as an Exploratory Neuroscience Research Center. The programmatic goals are to provide state-of-the-art infrastructure, to recruit neuroscientists, establish a Center of Excellence and effective research collaborations with leading extramural and Intramural laboratories.

  • Specialized Neuroscience Research Programs (SNRP) at Minority Institutions, jointly sponsored by the NINDS, National Center for Research Resources (NCRR), NCMHD and National Institute of Mental Health (NIMH), provide broad ranging support to augment and strengthen neuroscience programs while fostering collaborative research opportunities and promoting training. The Specialized Center Cooperative Agreements strive to meet the following programmatic goals:

    1. To assist in infrastructure development leading to well-established, state-of-the-art neuroscience research programs;
    2. To foster innovative and effective partnerships and collaboration between minority institutions and established neuroscience laboratories at federal and non-federal research institutions;
    3. To create, support and maintain a stimulating academic and intellectual milieu to inspire and prepare students and fellows to pursue research careers in neuroscience; and
    4. To provide support to develop and sustain competitively funded neuroscience research projects and programs.

    The NINDS currently supports 10 programs and 32 collaborating neuroscience research laboratories. Long-term performance measures include scientific publications, scientific presentations at national and international meetings, improved research infrastructure, recruitment of new faculty, the submission and funding of high-quality applications for program-based research projects and an increase in the number of minority fellows or students involved in Center activities.

  • Society for Neuroscience Travel Fellowship increases the number of pre- and postdoctoral fellows from minority groups currently underrepresented in neuroscience research. Participants are provided year-round mentors and are exposed to seminars and summer enrichment activities to facilitate their career advancement in neuroscience.

  • Society for Advancement of Chicanos and Native Americans in Science (SACNAS) Neuroscience Scholarship Program aims to identify, recruit and develop minority pre- and postdoctoral students to engage in cutting-edge neuroscience research. Participants are exposed to seminars and summer enrichment activities to facilitate their career advancement in neuroscience.

  • Collaborative Neurological Sciences Awards (CNS) provide for investigator-initiated collaborative research projects to develop independent neuroscience research programs at minority institutions.

  • Career Development Awards for Minority Scholars in Neuroscience (K01) provide for intense periods of supervised research for minority faculty.

  • NIH Research Supplements for Underrepresented Minorities Program is part of an NIH initiative to increase the number of underrepresented minorities in biomedical research. The NINDS emphasizes the use of administrative supplements to attract and bolster research experiences and training activities for underrepresented minorities. Many awardees successfully transition into individual training, career development and research awards.


    In order to facilitate successful transition from Research Supplements to other training, career development and research programs, NINDS will hold the First Annual Career Development Technical Assistance Workshop on March 31, 2003. The goals for this workshop are to 1) provide minority and disabled investigators with information on funding opportunities at NINDS, 2) provide instruction for preparing training, career development and research proposals, and 3) facilitate interaction among investigators and the development of scientific networks.

  • Predoctoral Fellowships provide opportunities for students from under-represented backgrounds to participate in clinical or basic laboratory research

  • Matching Supplements to Institutional National Research Service Awards support additional training slots on training grants if the program recruits and appoints a pre- or postdoctoral fellow from an underrepresented minority group.

    • Purpose and Eligibility

Other NINDS/NIH programs to include minority students/investigators:

  • Training Program for Physicians allows minority physicians to receive subspecialty training in clinical and basic research in the neurological sciences. Index of programs can be found at: http://www.training.nih.gov

  • Traineeships in Biotechnology Program support faculty and students from minority schools to participate in a course on Special Topics in Biotechnology (sponsored jointly with the Foundation for Advanced Education in the Sciences).

  • NIH Undergraduate Scholarship Program offers competitive scholarships to exceptional students from disadvantaged backgrounds who are committed to biomedical, behavioral and social science research careers at the NIH. Additional information can be found at http://ugsp.info.nih.gov/.

  • Youth Initiatives in Health and Biomedical Research support workshops and laboratory tours for high school students.

    • National Hispanic Youth Initiative - July 7, 2003 and July 21, 2003
    • National Native American Youth Initiative - June 26, 2003
    • National African American Youth Initiative - June 23, 2003

  • NINDS Mini-Sabbaticals Program allows minority scientists to work with NINDS investigators to enhance their scientific and research skills. Information regarding neuroscience research being conducted at the NIH can be found at http://neuroscience.nih.gov/.

  • Internships in Brain and Nervous System Research is a Summer Program at the NINDS for academically talented high school, undergraduate, graduate, and medical students. Additional information can be found at http://www.ninds.nih.gov/jobs_and_training/summer/.

  • Clinical Electives in Medical and Surgical Neurology provides rotations on the NIH campus for medical students contemplating a career in the neurological sciences.

  • Clinical Research Training Program for Medical Students is a yearlong tutorial program for medical students pursuing a career in health research.

  • The NIH Academy is designed to create a diverse cadre of researchers to eliminate health disparities. Additional information can be found at http://www.training.nih.gov.

  • Postbaccalaureate IRTA Fellowship Program provides a year of clinical and basic neuroscience research in the Institute's intramural research program.

  • Howard Hughes-NIH Research Scholars Program for medical and dental students provides basic research training on the NIH campus. Additional information can be found at http://www.hhmi.org/research/cloister/.

  • Meyerhoff Scholarship Program is an honor program for talented students in the areas of science, engineering, mathematics and computer science. The NINDS provides research training opportunities for Meyerhoff Scholars in its intramural laboratories. Additional information can be found at http://www.umbc.edu/Programs/Meyerhoff/

Recent programs and progress to-date:



Goal 1: Implementation of basic, translational and clinical neuroscience research programs at minority institutions to advance and promote our health disparities research agenda.



(a) Specialized Neuroscience Research Programs on Health Disparity: HIV and the Nervous System



In FY01, the NINDS funded two applications for Specialized Neuroscience Research Programs (SNRP) on Health Disparity: HIV and the Nervous System. The purpose of this program is to augment and strengthen the research capabilities of faculty, students, and fellows at minority institutions by supporting the development of new, and/or the enhancement of ongoing basic and clinical Neuro-AIDS related research projects and programs.



  • Specialized Neuroscience Research Program (SNRP) on HIV and the Nervous System at the University of Puerto Rico will establish a cohort of Hispanic women, children and men with detailed neurological, neurophysiological, virological and immunological parameters to determine the major host and viral factors responsible for disease pathogenesis.

  • Specialized Neuroscience Research Program (SNRP) on HIV and the Nervous System at the University of Hawaii will undertake a study in Hawaii on the prevalence and incidence of dementia in HIV seropositive individuals 50 years of age or more compared with younger HIV seropositive individuals. Other projects within this program will examine the role of macrophage in AIDS dementia.

Long-term performance measures include scientific publications, scientific presentations at national and international meetings, improved research infrastructure, recruitment of new faculty, the submission and funding of high-quality applications for program-based research projects and an increase in the number of minority fellows or students involved in Center activities.



Proposed New Directions in Research Capacity Building and Enhanced Training Among Minority Institutions and Researchers:



Goal 1: Identify and support the next generation of basic, clinical and translational minority neuroscientists.



(a) Establishment of Education Projects (R25) for Minority Neuroscience Scholars Programs through National Scientific Societies.



These programs are designed to enhance collaboration with scientific societies to identify and support the next generation of basic, clinical and translational neuroscientists; to stimulate communications between all segments of the research community interested in advancing neurologic health care; and to promote improved outreach to communities at increased risk for diseases and disorders of the nervous system. To achieve success in this initiative, the NINDS is partnering with scientific societies to develop innovative programs to attract and retain minorities for future training and leadership positions in our extramural research community.



A planning panel was held on October 5, 2001 which convened invited representatives of various national scientific organizations to discuss and provide advice on specific strategies to foster increased numbers of well-trained minority neuroscientists to meet our future scientific and technology needs.



NINDS Health Disparities Planning Meeting Report for Neuroscience Scholars Programs.



As a result of this planning panel, an RFA was published in the NIH Guide soliciting applications for Neuroscience Scholars Programs (RFA-NS-03-002). Applications have been received and are pending review.



Near-term performance measures include increasing the number of Scientific Societies with Neuroscience Scholars Programs. Longer-term performance measures include increasing the number of stipends awarded and the number of education projects within these programs.

Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation


 

AREA OF FOCUS IX: Dissemination of Public Information and Outreach


Ongoing Programs: Public Education and Outreach Activities Related to Minority Health Disparities include several ongoing programs to disseminate educational information, and to assist in the treatment of stroke to minority populations.

  • Each year during May, National Stroke Awareness Month, the NINDS Office of Communications and Public Liaison (OCPL) makes a special effort to highlight stroke prevention and awareness messages in media materials. During May 2003, the NINDS OCPL issued a news release on a Duke study, headed by Dr. Ronnie Horner, concerning the lower rates of stroke recovery in African Americans. This release was distributed through BlackPR.com, an ethnic press release distribution service with a reach of more than 350 African American magazines, newspapers and radio stations. The release was also distributed through the National Newspaper Publisher's Association (NNPA), which provides wire stories to more than 200 African American newspapers.

  • The NINDS OCPL is developing an audio news release (ANR) on the same Duke study, with sound bites by Dr. Horner. Radio is considered the most effective media to reach African Americans. The ANR is expected to receive over 200 broadcasts and make 3 million listener impressions. Radio stations in the Stroke Belt will be targeted.

  • The NINDS OCPL is also preparing a matte news release on the Know Stroke program in English and Spanish. This will be distributed to 130 community newspapers and is expected to reach 1.2 million readers.

  • NINDS tested the Know Stroke brochure and poster in focus groups with Hispanic and Latino men and women and used this research to devise a new translation of both products ensuring that the clearest and most effective language was used to reach the Spanish speaking audiences.

  • Health Fairs - the NINDS continues to supply its stroke brochures to dozens of health fairs throughout the year, many of them with underserved populations. Twenty-one brochures and a bookmark have been translated into Spanish. The NINDS communications contractor has identified several new health fairs for the coming year that will target minority audiences.

  • The NINDS continues to play an active role in the Stroke Belt Consortium, has distributed patient education kits to communities throughout the south, and is invited annually to speak at the national meeting and present the latest educational programs.

Recent Programs and Progress-to-Date:

Goal 1: Disseminating the NINDS Health Disparities Strategic Plan

(a) Draft plan

A draft of the plan was distributed via mail to individuals representing the minority biomedical and bio-behavioral communities, members of appropriate societies and organizations, and advocacy groups from which comments and suggestions were received and integrated into the plan. The draft plan was then posted on the NINDS home page and public comments and suggestions were encouraged.

(b) The final plan is available to the nation via the NINDS website.

The NINDS Health Disparities Strategic Plan will continue to be updated as progress is made on individual components of the plan. These updates will also be available to the nation via the NINDS website.

Proposed New Directions in Dissemination of Public Information and Outreach: To increase dissemination of information about stroke and other neurological disorders, the NINDS OCPL will focus on the following goals:

Goal 1: Expansion of Information Network

(a) Expand efforts to use the media, non-profit organizations, and professional societies for distribution of information about research, prevention, and treatment of these disorders.

(b) Expand listings of available resources for the public to include relevant organizations, particularly those that offer programs targeted to African Americans.

Measures of progress for this goal focus on level of activity, such as number of organizations that distribute information brochures regarding NINDS activities, number of organizations listed where resources may be found, etc.

Goal 2: Dissemination of Medical News/Information to the Public

(a) Partnerships with non-profit organizations to advance health messages of interest to minority communities and individuals at-risk for stroke and other neurological disorders.

(b) Improve the distribution of health information at meetings and events, including those where NINDS does not currently exhibit.

As with Goal 1, performance measures focus on level of activity, such as number of partnerships initiated and number of meetings where NINDS materials are distributed.

Goal 3: Development of New Communications Outlets

(a) Increase efforts to translate NINDS publications into Spanish, and provide links to Spanish-language publications and websites on the NINDS home page.

(b) Develop an email list service/interest group of individuals serving or representing minority communities and organizations to assist in efforts to reach their communities.

Measures of performance on this goal include number of NINDS publications translated into Spanish, establishment of links to Spanish-language publications and websites on the NINDS homepage, and establishment of an email list service.



AREA OF FOCUS X: Inclusion Policies/Activities for Minorities in Clinical Research

Ongoing Programs: The NINDS supports two clinical trials in stroke and several observational studies directed at specific ethnic populations in the areas of stroke, epilepsy, neurological complications of HIV/AIDS, neurological complications of systemic lupus erythematosus, and pain. These clinical research projects present specific opportunities for minorities to be involved as participants in research.

The clinical trials are:

  • African-American Antiplatelet Stroke Prevention Study is an on-going multicenter, randomized double-blind clinical trial of ticlopidine and aspirin in subjects with non-cardioembolic ischemic stroke. The study began in 1995, has 35 sites, and as of July, 1999, it has enrolled more than 1100 patients. The target is 1800 participants. Most patients in the study are overweight, and they suffer from hypertension, smoking, lack of exercise, and to a lesser extent diabetes, hypercholesteremia, and family history of stroke.
  • Secondary Prevention in Small Subcortical Strokes is a pilot study in 100 patients at risk for lacunar infarcts. Lacunes comprise nearly 25% of brain infarcts, are harbingers of vascular dementia, and are particularly frequent in Mexican-Americans. Combination antiplatelet therapy and intensive lowering of blood pressure could substantially reduce major vascular events and cognitive decline in these patients. This is the first clinical trial to assess secondary prevention in lacunar infarcts, and specifically in Mexican-American subjects.

The other clinical research studies include:

  • Multicenter Study of Idiopathic Generalized Epilepsy
  • Stroke Incidence and Risk Factors in a Tri-ethnic Region
  • Hemorrhagic and Ischemic Stroke Among Blacks and Whites
  • Predictors of Neuropsychiatric SLE
  • Pathobiology of Cerebral Cavernous Malformations
  • Diabetic Neuropathy Study
  • Stroke Surveillance in a Biethnic Community
  • Family Study of Stroke Risk and Carotid Atherosclerosis
  • Functional Genomics of Arterial Thrombosis
  • Ethnic Differences in Responses to Painful Stimuli
  • Etiology of Geographic and Racial Differences in Stroke
  • Immunopathogenesis of HIV Neurological Disorders at the University of Puerto Rico
  • University of Hawaii NeuroAIDS Study

Proposed New Directions in Inclusion Policies/Activities for Minorities in Clinical Research:

Goal 1: Establish a National Network on Minority Health Disparities Prevention/Intervention Research in Neurological Disease.

(a) The NINDS proposes to establish a prevention/intervention research network throughout the extramural community.

The goal is to foster stronger linkages between investigators at minority and majority institutions with community-based organizations to improve minority recruitment and retention in clinical studies. The Specialized Center Grant Cooperative Agreement Program will be utilized to support this network.

The key near-term performance measure is the number of extramural research organizations that are part of the network. Longer-term performance measures will focus on productivity of the network, such as number of minority professionals conducting this type of research within the network, number of submitted high-quality applications on minority health disparities issues, and similar measures.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



PERFORMANCE AND OUTCOME MEASURES

The NINDS is proceeding with its health disparities planning activities to better define the research priorities and objectives for reducing the burden of neurological disease in minority populations. The proposed action plans and goals of our strategic plan are straightforward, measurable and will be implemented over the next several years.

The ultimate measure of performance or impact is the reduction or elimination of disparities in the burden of neurological disorders and stroke among the nation's population. Pragmatically, this long-term goal is achieved incrementally over time through development of the necessary research infrastructure and through the identification (that is, discovery) and subsequent implementation of replicable and sustainable interventions. These structures and processes are intermediate steps to achieving the primary outcome, namely, changes in health among populations with excessive disease burden, and provide the basis for measuring success toward the ultimate goal. Accordingly, the performance measures that the NINDS Minority Health Disparities programs will employ to assess progress emphasize indicators of structure and process.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



TIMEFRAME FOR PLAN IMPLEMENTATION

The NINDS Five-Year Strategic Plan on Minority Health Disparities will unfold over Fiscal Years 2002-2006. Activities in Areas of Focus I (Stroke), II (NeuroAIDS), IV (Pain), V (Cognitive and Emotional Health of Children), and VI (Epilepsy) have already begun. Areas of Focus III (Diabetes) and VII (Injury to the Developing Brain) activities will be initiated within the next 1-2 years. Activities associated with the general or cross-cutting Areas of Focus (Research Capacity, Dissemination, and Inclusion Policies/Activities) will be pursued in all years of the plan.


Back to Top - Table of Contents - NINDS Mission/Vision Statement - Overview of the NINDS Strategy - NINDS Area of Emphasis - Area of Focus I - Area of Focus II - Area of Focus III - Area of Focus IV - Area of Focus V - Area of Focus VI - Area of Focus VII - Area of Focus VIII - Area of Focus IX - Area of Focus X - Performance and Outcome Measures - Timeframe for Plan Implementation



PREPARED BY: 

Alfred Gordon, Ph.D., Associate Director for Minority Health and Research, Office of Minority Health and Research
Ronnie D. Horner, Ph.D., Program Director, Office of Minority Health and Research
Ms. Donna Sullivan, Program Analyst, Office of Minority Health and Research
 

For additional information or comments please contact:

Office of Minority Health and Research
National Institute of Neurological Diseases and Stroke
Neuroscience Center, Suite 2149
6001 Executive Boulevard
Rockville, MD 20892-9535
For courier service: MD 20852
Tel: 301-496-3102
Fax: 301-594-5929

Last updated April 28, 2014