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12. Minority Activities
Throughout its history, the NHLBI has been a leader in
conducting and supporting research to eliminate health disparities that exist
between various segments of the U.S. population. The Institute has not only
initiated research projects with significant minority participation in order to
compare health status between various populations, but also given high priority
to programs that focus exclusively on minority health issues.
Since FY 1991, the Institute has had procedures in
place to ensure full compliance with the NIH Policy on Inclusion of Women and
Minorities as Subjects in Clinical Research. As a result, all NHLBI-supported
research that involves human subjects includes minorities, with the exception
of a very few projects for which a compelling justification for limited
diversity in the study population exists. Thus, all segments of the population,
both minority and non-minority, stand to benefit from the Institute’s
research programs.
It has long been a goal of the NHLBI to increase the
number of individuals from underrepresented groups in biomedical and behavioral
research. Selected FY 2005 activities addressing this goal include the
following:
- Minority K–12 Initiative for Teachers and
Students (MKITS): Supports research, development, and evaluation of innovative
science training programs to provide minority students in grades K–12 with
the exposure, skills, and knowledge that will encourage them to pursue advanced
studies in biomedical and behavioral sciences.
- Historically Black Colleges and Universities (HBCU)
Research Scientist Award: Supports efforts by HBCU to recruit an established
research scientist in cardiovascular, lung, or blood health and disease;
transfusion medicine; or sleep disorders.
- Sickle Cell Scholars Program: Supports career
development of young or new investigators in SCD research.
- Summer for Sickle Cell Science Program: Supports
research training and mentoring of individuals from high school to junior
investigator level as part of the Comprehensive Sickle Cell Centers
program.
- Student National Medical Association Externship in
Sickle Cell Disease: Supports an 8-week clinical rotation in SCD for third- and
fourth-year medical students at an NHLBI-funded medical institution engaged in
sickle cell research and patient care.
- Research Scientist Award for Minority Institutions:
Strengthens the biomedical and behavioral research capabilities and resources
of minority institutions by recruiting an established scientist with expertise
in areas related to cardiovascular, lung, or blood health and disease;
transfusion medicine; or sleep disorders.
- Minority Undergraduate Biomedical Education
Program: Encourages development of pilot demonstration programs at minority
under-graduate educational institutions to recruit and retain talented
undergraduate students in the biomedical sciences.
The Office of Minority Health Affairs (OMHA) within
the OD provides oversight for, and coordinates, supports, and evaluates
Institute programs related to minority health outcomes, including research,
research training and career development, public outreach, and translation of
research findings. The OMHA also coordinates activities to foster greater
participation of underrepresented minorities in NHLBI research and research
training programs. Selected FY 2005 activities include the following:
- Issuing four training and career development RFAs
to increase the number of highly trained minorities conducting biomedical and
behavioral research. Additional targeted groups include individuals from
underrepresented racial and ethnic groups or disadvantaged backgrounds or
individuals with disabilities.
- Participating in HHS-Endorsed Minority Organization
Internship Programs by providing positions in NHLBI extramural divisions to
students from the National Association for Equal Opportunity in Higher
Education, the Hispanic Association of Colleges and Universities, and the
Washington Internships for Native Students programs.
- Cosponsoring with the NIH, the Cherokee Elementary
School Project: Out of the Box, which is designed to create awareness and
interest in the importance of science, medicine, and health; eliminate gaps in
quality of health among minorities by encouraging health-related careers; and
encour-age youngsters to take responsibility for their own health.
- Supporting the African American, Hispanic, and
Native American Youth Initiatives to bring minority students to the NIH campus
for scientific presen-tations, an introduction to NHLBI’s research
training and career development programs, and a tour of several NHLBI
laboratories.
- Providing undergraduate students from the Tougaloo
College Scholars program the opportunity to observe biomedical research at the
NHLBI during a 3-day tour of the NIH that included learning about the NIH and
available research training opportunities.
- Conducting a workshop on “Academic and Career
Guidance” for Intramural Research Training Award (IRTA) students including
the Biomedical Research Training Program for Underrepresented Groups to
facilitate postbaccalaureate students to phase into biomedical research
careers.
See Chapter 13 for
additional NHLBI-supported minority research training and career development
programs.
The following text describes selected current projects
that focus on minority populations and reflect the Institute’s research
portfolio related to minority health. Additional information can be found in
Chapters 9 through 11.
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Heart and Vascular Diseases
Risk Factors
Epidemiology
Long-term epidemiologic studies are critical to
uncovering risk factors that lead to disease. The Institute has initiated
several major studies of heart disease focused significantly or completely on
minority populations.
- CARDIA (see Chapter
10): To determine the evolution of CHD risk factors and lifestyle
characteristics in young adults that may influence development of risk factors
prior to middle age; 50 percent of the participants are black.
- ARIC (see Chapter 10):
To investigate the associ-ation of CHD risk factors with development of
atherosclerosis and CVD in an adult population; 30 percent of the participants
are black.
- CHS (see Chapter 10):
To examine risk factors for CHD and stroke in the elderly; 16 percent of the
participants are black.
- Strong Heart Study (see Chapter 9): To compare risk factor levels and morbidity
and mortality from CVD among American Indians from three different geographic
locations.
- JHS (see Chapter 10):
To identify environmental and genetic factors influencing evolution and
progression of CVD in blacks.
- MESA (see Chapter 10):
To examine the characteristics of subclinical CVD that predict progression to
clinically overt CVD and related risk factors that predict subclinical disease
in blacks, whites, Hispanics, and Asians; 62 percent of the participants are
minorities.
- GOCADAN (see Chapter 9):
To document CVD risk factors and measures of subclinical disease and to
identify and characterize genes that contribute to CVD in approximately 40
extended Alaska Native families.
Several investigator-initiated epidemiologic studies
are examining gene–environment interactions that increase CVD risk factors
among various racial groups. Included among them are studies that compare
gene–environment interactions in black populations in Africa, the
Caribbean, and selected areas of the United States; determine the genes
responsible for the metabolic syndrome, a risk factor for CVD, in 10,000
Chinese sibling pairs; determine the genes responsible for CVD risk factor
response to dietary fat changes in blacks; investigate genes influencing
changes in blood pressure in response to high- and low-salt diets in a rural
Chinese population; and identify and map specific genes that contribute to CVD
risk in Mexican Americans.
Scientific evidence is emerging that implicates
cellular and inflammatory processes in the development and characteristics of
atherosclerotic plaque and the clinical course of CVD. One study seeks to
identify cellular, metabolic, and genomic correlates of atherosclerotic plaque
characteristics and early changes in the vascular wall in a subset of the ARIC
cohort that is predominately black. Another study is elucidating the links
between socioeconomic factors, stress, inflammation and hemostasis, and
cardiovascular risk in a large and diverse population-based sample.
Several drugs in four widely used classes of
noncardiovascular medications (fluoroquinolone and macrolide antibiotics,
antipsychotics, and antidepressants) have been shown to be pro-arrhythmic and
thus increase the risk of sudden cardiac death. Investigators are conducting a
study, using a large and comprehensive data set of about 800,000 people, 40
percent blacks, to understand the role of these medications on the risk of
sudden cardiac death. Research findings will provide information that
clinicians need to prescribe these widely used medications in a way that
minimizes the risk of sudden cardiac death.
An ancillary study to MESA is seeking to determine
whether impairment of myocardial perfusion reserve can serve as a marker of
CHD. Scientists hypothesize that impaired myocardial perfusion reserve
indicates the presence of subclinical coronary atherosclerosis and coronary
microvascular disease. Developing a new measure of subclinical disease would
enable early interventions and lifestyle modifications to prevent CHD. Fifty
percent of the population will be Hispanic. Other ancillary studies to MESA are
investigating progression of carotid atherosclerosis, association of risk
factors with arteriosclerosis measured in retinal vessels, and the relationship
of sex hormones to subclinical CVD and other risk factors in men and women.
The Institute is supporting additional epidemiologic
investigations that include a study of Chagas’ disease— a leading
cause of heart disease throughout Latin America—to identify genetic
determinants of susceptibility to infection and differential disease
pathogenesis in a black population residing in rural Brazil; a project to use
pooled data from nine existing U.S. studies to compare between blacks and
whites, CHD incidence and mortality rates, exposure–outcome relationship,
patterns of comorbidity, and population attributable risk; and a study to
evaluate and compare the extent of atherosclerosis and risk factors for CHD in
three different populations: U.S., Japanese American in Hawaii, and Japanese in
Japan.
Treatment and Prevention
Low-dose aspirin is cost effective and efficacious for
the prevention and treatment of CHD. However, some individuals, perhaps because
of genetic variations across individuals, do not respond to the treatment. A
genetic study in high-risk siblings of patients with premature CHD, along with
their adult offspring, is seeking to determine whether low-dose aspirin
responsiveness is heritable and whether it is associated with specific
variations in candidate genes or defined haplotypes; 50 percent of the
participants are black.
Many evidence-based guidelines for treatment of risk
factors or disease have been developed, but they are often not adhered to by
patients—especially minority populations— or adopted in routine
clinical practice. The Institute has initiated the following activities to
address this important problem:
- Trials Assessing Innovative Strategies To Improve
Clinical Practice Through Guidelines in Heart, Lung, and Blood Diseases: To
identify obstacles to implementing national evidence-based guidelines and test
interventions to promote their use in clinical practice. Several approaches
will be tested, including use of decision support tools; interactive seminars;
Internet learning; a computerized patient activation tool placed in the waiting
room of primary care offices; and performance feedback and practice
profiling.
- Overcoming Barriers to Treatment Adherence in
Minorities and Persons Living in Poverty: To overcome barriers to treatment
adherence for lifestyle changes and pharmacologic therapy in minorities and
persons living in poverty. Studies are testing several approaches, such as
telephone-based interventions, nurse case management and counsel-ing, and
patient and physician education interven-tion in clinical and community
settings designed to overcome patient, provider, and medical systems barriers
that impede treatment adherence. Urban and rural blacks, Hispanics, Asians, and
women are the targeted groups.
Although great progress has been achieved in reducing
CVD morbidity and mortality in the United States over the past 40 years,
minorities have not shared fully in the progress and continue to have higher
CVD morbidity. To address this problem, the Institute has initiated programs
directed at reducing cardiovascular disparities:
- Partnership Programs To Reduce Cardiovascular
Disparities: To expand the capacity of research institutions to reduce health
disparities, encourage more researchers to focus on minority health, and
improve minority acceptance and community willingness to participate in
research by pairing research-intensive medical centers that have a track record
of NIH-supported research and patient care with minority health care serving
institutions that lack a strong research program. Research will focus on the
complex biological, behavioral, and societal factors that result in
cardiovascular health disparities in their target populations (e.g., blacks,
Hispanics, Native Hawaiians, Pacific Islanders).
- Cultural Competence and Health Disparities Academic
Award: To enhance the ability of physicians and other health care professionals
to address disparities in the occurrence, management, and outcomes of
cardiovascular, pulmonary, hematological, and sleep disorders among various
population groups in the United States in a culturally sensitive manner. The
award provides support to medical institutions in the United States to develop
core curricula and other educational materials to increase the overall
knowledge and skills of medical students, house staff, and other health
professionals, including practicing physicians, on ethnic, cultural, religious,
socioeconomic, linguistic, and other factors that contribute to health
disparities, and on culturally competent approaches to mitigating them.
- Community-Responsive Interventions To Reduce
Cardiovascular Risk in American Indians and Alaska Natives: To test the
effectiveness of culturally appropriate behavioral interventions that promote
adoption of healthy lifestyles related to heart disease and stroke risk,
including healthy diet, regular physical activity, smoking cessation, and
stress management in American Indians and Alaska Natives.
Education
The NHLBI, through its education programs (see
Chapter 2), disseminates health information to
physicians, health care professionals, patients, and the public on ways to
prevent or treat diseases within the Institute’s mandate. It has developed
the following community-based programs to combat cardiovascular health
disparities among four major cultural/ethnic groups: blacks, Hispanics,
American Indians and Alaska Natives, and Asian Americans and Pacific
Islanders.
- Public Health in Public Housing: Improving Health,
Changing Lives: To disseminate to populations residing in public housing health
information about improving cardiovascular health by adopting heart healthy
lifestyles.
- Salud para su Corazón: To disseminate
information on CVD prevention, intervention, and treatment and promote heart
healthy behaviors in Hispanic communities through lay health educators
(promotores model).
- NHLBI–Indian Health Service Partnership To
Strengthen the Heartbeat of American Indian and Alaska Native Communities: To
develop and initiate in three tribal communities effective approaches to
improve cardiovascular health, including implementing tailored heart health
strategies, and creating a national cardiovascular health training program,
“Honoring the Gift of Heart Health,” with the Indian Health
Service.
- NHLBI Asian American and Pacific Islanders Heart
Health Outreach Project: To develop culturally and linguistically appropriate
outreach activities and information to increase community awareness of heart
disease and its associated risk factors and to promote heart healthy lifestyles
among a diverse Asian American and Pacific Islander population.
In addition to the activities mentioned above, the
Institute has prepared publications on CVD prevention for minority populations.
They include the following:
- Improving Cardiovascular Health in African
Americans—Package of Seven Easy-To-Read Booklets
- Heart-Healthy Home Cooking African American
Style
- Eight Easy-to-Read Booklets in Spanish and English
on Heart Health
- Bringing Heart Health to Latinos: A Guide for
Building Community Programs
- Your Heart, Your Life: A Health Educator’s
Manual for the Latino community
- Filipinos Aspire for Healthy Hearts Fact
Sheets in Tagalog and English
- Filipinos Take It To Heart: A How-To Guide for
Bringing Heart Health to Your Community
- Vietnamese Aspire for Healthy Hearts Fact
Sheets in Vietnamese and English
- Treat Your Heart to a Healthy Celebration
directed to American Indians and Alaskan Natives
- Honoring the Gift of Heart Health: A Heart
Health Educator’s Manual for Native Americans.
The educational materials listed throughout this
chapter may be obtained from the NHLBI public Web site or through the NHLBI
online catalog.
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Arrhythmias
During the past decade, research studies have shown a
lower incidence of atrial fibrillation in blacks compared to whites. However,
the picture for ventricular fibrillation, a more lethal disturbance of heart
rhythm, is far less sanguine. Blacks with ventricular fibrillation were less
likely than whites to undergo electrophysiologic testing and, when discharged
from the hospital, had higher mortality rates over the next year. In addition,
blacks with out-of-hospital arrest suffered more ventricular arrhythmias than
whites in every age group. Survival rates after cardiac arrest were 3.25 times
greater for whites than blacks.
The NHLBI is supporting basic and genetic research on
cardiac arrhythmias to elucidate the mechanisms involved in control of heart
beat/rhythm and to develop improved therapies for all ethnic/racial groups in
the United States. One research group has found a gene variant in blacks that
produces a small increase in risk of arrhythmia. In combination with certain
medications, low blood potassium levels, or structural heart disease, such a
gene variant might further magnify the risk of life-threatening arrhythmias.
Another group is studying selected genes and their variants that are likely
candidates for modulating cardiac rhythm, may contribute to variations in
response to drug treatment of atrial fibrillation, and may alter healthy heart
rhythm patterns.
High Blood Pressure
Etiology and
Pathophysiology
High blood pressure is a serious health problem that
is especially prevalent and severe among minorities. Institute-initiated
studies addressing the etiology and pathophysiology of high blood pressure
include:
- Molecular Genetics of Hypertension (see Chapter 9): To determine the etiology and pathogenesis
of hypertension and its complications in order to improve diagnosis and
treatment. Many of the subprojects have a high percentage of minority
participation; others target blacks or Hispanics exclusively.
- Family Blood Pressure Program (see
Chapter 9): To use a network of investigators to
identify genes associated with high blood pressure and to examine interactions
between genetic and environmental determinants of hypertension in specific
minority populations: blacks, Mexican Americans, and Asians.
The NHLBI supports a number of investigator- initiated
studies to identify genes linked to hypertension in blacks, Mexican Americans,
and whites to determine if part of the disparity in prevalence can be
attributed to genetic differences among the groups. Genes under investigation
include those associated with the renin-angiotensin system, the autonomic
nervous system, and sodium transport.
The Institute supports a number of projects to examine
antecedents of hypertension in children to determine racial differences in
blood pressure regulation. One study is determining relationships between
cardiovascular reactivity in adolescent normotensive blacks and development of
pathobiologic markers of hypertension risk (i.e., increased resting blood
pressure, left ventricular mass, and relative wall thickness) later in life.
Another is investigating the genetics of cardiovascular reactivity following
stress in black youths.
Researchers also are examining the influence of SES
and ethnic discrimination on stress reactivity to determine if it provides a
pathophysiologic link to CVD in blacks. One group is examining the combined
influence of low SES and ethnicity on development of behavioral risk factors
(i.e., hostility, anxiety, and heightened cardiovascular reactivity to stress)
in a group of adolescents; 50 percent of them are black. Another group is
assessing the relationship between early life exposure to socioeconomic
stressors, such as adverse socioeconomic conditions, low levels of social
integration, and racial discrimination, and development of hypertension in
blacks.
Investigators have observed that blacks have an
augmented blood pressure response to salt. A study to improve understanding of
the genetic basis and phenotypic characterization of salt-sensitive
hypertension in blacks has located a specific region of the kidney where sodium
is reabsorbed more extensively in blacks than in whites.
Impaired sodium regulation also appears to be linked
to the development of hypertension. Scientists are investigating the effects of
stress on salt retention and measuring hormonal variables known to influence
sodium regulation. One study is seeking to determine whether the mechanisms
regulating sodium retention differ between blacks and whites. Researchers found
that black youths have a slower salt excretion rate in response to stress than
white youths. Another study is examining the role of sodium and obesity in
hypertension development among blacks living in three different environments:
Nigeria, Jamaica, and Chicago. In a twin study consisting of 41 percent blacks,
scientists are investigating sodium retention as a mechanism augmenting
systemic vascular resistance and changes in vascular function, ventricular
structure, and blood presssure.
The role of dietary factors, particularly
macronutrients, in the etiology of high blood pressure is another area of
investigation. Scientists are conducting epidemiologic studies among
participants with diverse ethnicity, SES, and dietary habits in four countries
to determine the impact of selected dietary components (proteins, lipids,
carbohydrates, amino acids, calcium, magnesium, sodium, potassium,
antioxidants, fiber, and caffeine) on blood pressure. Another study is seeking
to identify the link between healthy diet, genetic factors, and their
underlying biological mechanisms.
Treatment and Prevention
Identifying effective treatment strategies for various
populations requires large-scale studies with representative populations in
sufficient numbers.
- ALLHAT (see Chapter
11): To compare the combined incidence of fatal CHD and nonfatal MI among
patients receiving ACE inhibitors, calcium antagonists, or alpha-1 blockers and
patients in a control group receiving a diuretic. Also, in a subset of these
groups, to determine whether cholesterol-lowering therapy reduces mortality in
moderately hypercholesterolemic individuals compared with a control group; 32
percent of the participants are black and 19 percent are Hispanic. Research
findings demonstrated that the less expensive traditional diuretics work better
than newer medicines in treating high blood pressure and preventing some forms
of heart disease and should be preferred as a first therapy for most patients
with high blood pressure.
- Ancillary Pharmacogenetic Studies in Heart, Lung,
and Blood Diseases and Sleep Disorders: To conduct pharmacogenetic studies in
ongoing or completed clinical trials/studies related to heart, lung, and blood
diseases and sleep disorders to examine genetic influences on interindividual
differences in prescription drug response. Understanding the genetic influences
may permit improved medication choice and dosing in individuals and help avoid
either serious adverse response or lack of response to therapy. Three of the
studies focus on antihypertensive drugs and include 50 to 58 percent
blacks.
Although it is well known that reducing hypertension
will reduce CVD rates, the implementation of evidence-based guidelines for
hypertension treatment in clinical practice is not very high. To address this
issue, the NHLBI initiated a program to improve hypertension con-trol rates in
blacks, a group with the highest prevalence and earliest onset of hypertension
and with a disparately high premature cardiovascular mortality and
morbidity:
- Interventions To Improve Hypertension Control Rates
in African Americans: To evaluate the feasibility of clinical interventions
directed at the medical care delivery system to increase the proportion of
blacks who have their blood pressure controlled to levels specified by the JNC
VII guidelines.
Understanding racial differences in blood pressure
control is an area of major interest for the Institute. Scientists are
examining whether variations in genes of the renin-angiotensin-aldosterone
system predict differences in blood pressure response to diuretic therapy among
hypertensive blacks and whites. Research also is being focused on variations in
the ACE gene between blacks and whites to explain racial differences in the
antihypertensive responsiveness to ACE inhibitors.
The Institute supports a number of investigator-
initiated studies to evaluate various interventions to improve hypertension
management. One study is testing the effectiveness of a two-staged intervention
involving telemonitoring of blood pressure and telephone-based nurse care
management in 12 community-based clinics that serve economically disadvantaged,
largely black and Hispanic populations. Another study is evaluating two
interventions compared to usual care (regular primary care clinic visits) in
blacks with hypertension who have several risk factors (smoking, sedentary
lifestyle, and high sodium intake) for CVD. The interventions include the
following: (1) simultaneous intervention (smoking cession, increased exercise,
and decreased salt intake) in a clinical session, with stage-specific telephone
support and follow-up and (2) sequential intervention of each targeted behavior
presented individually at a clinic session, with stage-specific telephone
support and follow-up.
Anger and hostility have been demonstrated as risk
factors for hypertension. Scientists are evaluating an anger management
intervention in a hospital setting with 46 percent blacks to determine if it
will lead to improved blood pressure and psychosocial risk factors (e.g.,
reduce depression).
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Education
The NHLBI (see Chapter 2)
has developed a number of outreach activities to inform minority populations of
the importance of blood pressure control. Included among them are a toll-free
number that provides materials on hypertension in English or Spanish; mini
telenovelas (Más vale prevenir que lamentar), “health moments”
to reinforce CVD prevention for local Spanish-language television stations; a
Spanish version of the High Blood Pressure Education Month Kit; and several
publications for health professionals, patients, and the public. Below are some
examples:
- Sí se Puede: Prevenir y Controlar la
Presión Arterial Alta con Actividad Física
- Plan de Alimentación Saludable Contra la
Hipertensión: Prevenir y Controlar la Presión Arterial Alta
Siguiendo el Plan de Alimentación Conocida Como DASH
- Sí se Puede: Prevenir y Controlar la
Presión Arterial Alta. Lo Que Usted Debe Saber Sobre la
Preventión y Control de la Presión Arterial Alta
- Sí se Puede: Prevenir y Controlar la
Presión Arterial Alta. Lo Que los Médicos Deben Saber
- Take Steps To Prevent High Blood Pressure
in English and Spanish
- Cut Down on Salt and Sodium in English and
Spanish
- Churches as an Avenue to High Blood Pressure
Control
- Working With Religious Congregations: A Guide
for Health Professionals
- Protect Your Heart! Prevent High Blood
Pressure
- Spice Up Your Life! Eat Less Salt and
Sodium
- Keep the Harmony Within You—Check Your
Blood Pressure
- Keep Your Heart in Check—Know Your Blood
Pressure Number in Tagalog and English and in Vietnamese and English
- Prevent and Control High Blood Pressure:
Mission Possible.
NHBPEP Coordinating Committee
Activities
Member organizations of the NHBPEP coordinating
committee have continuing education programs on the prevention and treatment of
hypertension that are focused on their minority members. They also support
hypertension prevention and awareness in community-based settings such as
screening and church activities, community awareness campaigns, and media
events.
High Serum Cholesterol
Etiology
The Institute supports a number of investigator-
initiated projects to identify genes that influence the lipoprotein profile
within various racial and ethnic groups. Research findings could offer an
explanation for differences in susceptibility to CHD found between various
racial and ethnic groups.
Variation in hepatic lipase activity is associated
with differences in plasma concentrations of HDL and LDL synthesis and
catabolism. Researchers are investigating whether ethnic differences in hepatic
lipase activity are responsible for the well-known differences in plasma HDL
concentrations found in blacks and whites. Genetic studies are being conducted
on a population that is 39 percent black.
Prevention
The NHLBI is supporting an investigator-initiated
study among minority preschool children to track the long-term effectiveness of
nutrition interventions on blood cholesterol and diet. Additional potential
risk factors, such as increased blood pressure, obesity, and intention to
smoke, will also be monitored.
Education
The NCEP (see Chapter 2)
has prepared the following publications on blood cholesterol for minority
audiences.
- Learn Your Cholesterol Number in Spanish
and English
- Protect Your Heart—Lower Your Blood
Cholesterol in Spanish and English
- Heart-Healthy Home Cooking African American
Style
- Delicious Heart-Healthy Latino
Recipes
- Cut Down on Fat—Not on Taste in
Spanish and English
- Empower Yourself! Learn Your Cholesterol
Number
- Be Heart Smart! Eat Foods Lower in Saturated
Fats and Cholesterol
- American Indian and Alaska Native People: Treat
Your Heart to a Healthy Celebration
- Serve Up a Healthy Life—Give the Gift of
Good Nutrition in Tagalog and English, and in Vietnamese and English.
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Obesity
Etiology
The latest NHANES data show a continued rise in the
proportion of Americans who are overweight; black women are especially at risk.
To understand the reasons for the racial disparity among women, the Institute
initiated a long-term program, the NHLBI Growth and Health Study (NGHS), to
examine the development of obesity and CVD risk factors in a biracial cohort of
young girls. The study, which ended in FY 2000, found black girls consumed more
calories and a higher percentage of calories from fat and watched more
television than white girls. An investigator-initiated study using the NGHS
cohort, starting at ages 18 to 19 years, is examining the changes in cardiac
output and total peripheral resistance that occur with developing obesity and
their influence on ethnic difference in blood pressure regulation. Another
project, using data from the NGHS, is examining CHD risk factors in black and
white girls to identify genes involved in black–white differences in lipid
metabolism and obesity.
Black women have been shown to manifest lower resting
energy expenditure than white women. Scientists seeking to improve our
understanding of ethnicity, genetics, energy metabolism, and obesity
development will examine the relationship between two genes implicated in
energy metabolism and resting energy expenditure in high-risk blacks.
Menopause-related coronary risk was previously
believed to be associated with a gain in total body fat. Research, however,
suggests that the location of the fat, not the total fat per se, is the key
risk factor. An investigator-initiated study is seeking to determine if indices
of central adiposity, particularly intra-abdominal fat, predict coronary events
better than indices of total fat. The study is also examining the role of
central adiposity with altered glucose and lipid metabolism and elevated blood
pressure; 48 percent of the population is black.
Treatment and Prevention
The NHLBI has initiated several programs to treat or
prevent obesity.
- Overweight and Obesity Control at Worksites: To
test innovative interventions that emphasize environmental approaches or the
combination of environmetal and individual approaches at worksites to prevent
or treat obesity in adults. Environmental strategies include programs,
policies, or organizational practices (e.g., increasing the availability of,
and providing access to, healthful food choices and facilities for physical
activity, and creating a socially supportive climate to influence healthy
behaviors).
- POUND LOST (see Chapter
9): To evaluate the effectiveness of four diets differing in macronutrient
composition to promote and sustain weight loss in overweight and obese
individuals; approximately 25 percent of the participants will be black.
- Primordial Prevention of Overweight in American
Indian Children (see Chapter 9): To prevent American
Indian children from becoming overweight at an early age. Culturally
appropriate interventions, including family counseling to improve nutrition and
physical activity in infants and toddlers, will be developed and introduced
community-wide.
- WLM (see Chapter 9): To
determine the effectiveness of continuous patient contact on weight loss
maintenance in adults who recently lost weight; 40 percent of the patients are
black.
The Institute supports a number of
investigator-initiated studies on the effectiveness of obesity prevention and
control interventions among diverse populations. One study is testing the
effectiveness of weight-control interventions (involving diet, physical
activity, and psychosocial and familial influences) administered during the
critical transition period from prepuberty to puberty in black girls at high
risk for obesity. Two studies are evaluating the effectiveness of weight
control programs to prevent weight gain in a predominately black population
that has recently completed a smoking cessation program. The blood pressure
status of the participants, who are prehyper-tensive or hypertensive at the
beginning of the studies, will be monitored.
Hispanic parents and children are participating in a
program that targets physical activity and dietary behaviors in a
microenvironment (i.e., home environment) and in a macroenvironment (i.e.,
apartment complex, schools, grocery stores, parks, restaurants). Community
health workers (promotoras) are working with the families and the community to
increase awareness and promote environmental change. Preadolescent black girls
are the subject of (1) a study to test the efficacy of an after-school dance
program and (2) a family-based intervention involving reduced use of
television, videotapes, and video games to reduce weight gain.
Obesity is one of the major health challenges facing
American Indian children and has serious implications for the development of
type 2 diabetes. A school-based intervention, augmented with a family
intervention, is focusing on reducing excess weight gain by increasing physical
activity and healthy dietary practices in kindergarten and first-grade American
Indian children. A project with a subject population consisting of Asians,
Hispanics, and whites is testing an integrated school- and community-based
intervention involving physical activity and diet to reduce the prevalence of
obesity.
Blacks at high risk of CVD often have limited success
in weight loss and lifestyle change programs. A study was initiated to examine
the role of social support, particularly from family members and friends, to
facilitate weight loss and related dietary and physical activity changes in
blacks.
Education
The NHLBI OEI (see Chapter
2) has prepared health information on losing excess weight for
minorities.
- Watch Your Weight in English and
Spanish
- Embrace Your Health! Lose Weight if You Are
Overweight.
Physical Inactivity
The Institute has initiated research on the
effectiveness of an intervention program to encourage greater physical activity
among adolescent girls.
- TAAG (see Chapter 11):
To test the effectiveness of school–community-linked interventions to
reduce the decline in physical activity in adolescent girls, from grades 6
through 8. As estimated 5,000 girls, approximately 50 percent minority, from 36
schools are participating.
The NHLBI supports several investigator-initiated
studies on strategies to increase physical activity among minority populations.
Included among them are studies to examine the effect of vigorous exercise on
reduction of childhood obesity in black girls. A school-based study is
evaluating the effects of vigorous exercise programs on decreasing the
accretion of general and visceral adiposity in black girls.
An ancillary study to an Institute-initiated program
to reduce the decline in physical activity in adolescent girls (TAAG) is
investigating the influence of community characteristics (e.g., street design,
access to public transportation, facilities for physical activity, population
mix, socioeconomic mix of the neighborhood) on physical activity levels and
body mass index; approximately 50 percent of the girls are minority. Two other
studies are seeking to determine the factors that lead to decline in physical
activity in adolescent girls. They include the effects of previous exposure to
physical activity intervention, race and ethnicity, weight, psychosocial
influences, and the environment.
Physical inactivity among children is often attributed
to the lack of open space, lack of recreational equipment, and fear by parents
for the safety of children playing outdoors. A study is being conducted to
determine if an intervention that changes these neighborhood features in a
low-income, inner-city neighborhood will increase physical activity in
children.
Scientists have observed an age-related decline in
aerobic capacity, but have not been able to discern the effects of physical
activity, body fat, and genetic variation on its rate of change. They also have
little understanding about how the rate of change in aerobic capacity during
early and middle adulthood affects CVD development. An ancillary,
investigator-initiated study being conducted in conjunction with the Year 20
CARDIA examination is addressing these issues. Data from this study should
increase understanding of the interrelationships of cardiorespiratory fitness,
body composition, and CVD-related risk factors and endpoints, and may provide
the basis for more extensive evidence-based recommendations on the role of
fitness in cardiovascular health; 46 percent of the participants are black.
Education
The Institute has prepared the following publications
for minorities on the importance of physical activity and ways to become more
physically active.
- Stay Active and Feel Better in English and
Spanish
- Energize Yourself! Stay Physically
Active
- American Indian and Alaska Native People: Be
Active for Your Heart!
- Be Active for a Healthy Heart in Tagalog
and English
- Be Active for a Healthier Heart in
Vietnamese and English.
The Institute also has developed a Web-based
application on physical activity for lay health educators in English and
Spanish, which can be found at
http://hin.nhlbi.nih.gov/salud/pa/index.htm.
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Smoking
Smoking among minorities has increased significantly
compared with whites. To determine the causes of the increase, the Institute is
supporting an investigator-initiated study in a predominately minority
population to examine factors that prompt them to initiate smoking. In
addition, the study seeks to identify predictors of cessation.
The Institute is also supporting a number of studies
of smoking intervention and follow-up cessation mainten-ance that specifically
target minorities. Two studies are evaluating the effectiveness of smoking
cessation programs for smokers who seek treatment at the hospital emergency
department. One study involves patients who suffer from acute respiratory
illness; approximately 35 percent are minorities. The other targets Chinese
American patients hospitalized with CVD, pulmonary disease, or diabetes
mellitus. A third study is seeking to determine if the addition of a physical
activity interven-tion improves smoking cessation; 45 percent of the
participants are blacks.
Two types of pharmacologic therapies (nicotine
replacement therapy and sustained-release bupropion) have been approved by the
FDA for smoking cessation in the United States. Scientists are comparing the
ability of each drug alone or in combination to increase initial and long-term
smoking cessation rates in young low-income and minority smokers. Another study
is evalu-ating the efficacy of a weight loss drug intervention to prevent
weight gain in obese individuals participating in a smoking cessation program;
44 percent of the participants are black.
Education
The Institute has prepared the following publications
on smoking cessation for minorities.
- Kick the Smoking Habit in English and
Spanish
- Refresh Yourself! Stop Smoking
- American Indian and Alaska Native People: Help
Your Heart
- Don’t Burn Your Life Away—Be Good to
Your Heart in Tagalog and English and in Vietnamese and English.
Psychosocial Factors
Major depression is a risk factor in the development
of ischemic heart disease and for death after an acute MI.
Investigator-initiated research is seeking to determine the pathways that link
depression to physiological mechan-isms in post-MI patients. One study is
examining the link between the severity of depressive symptoms to the
inflammatory process implicated in atherogenesis by focusing on the basal
expression of cytokines and cell adhesion molecules on blood monocytes. Another
is focused on the autonomic nervous system and its link to depression. A third
study is investigating the role of platelets, platelet aggregation, and
adhesion in patients with major depression. Approximately a third of the
population in the studies is black.
The NHLBI is interested in the effect of depression,
anxiety, and lack of social support on prognosis after a CHD event. An
investigator-initiated study is examining the efficacy of individual and group
therapy in post-MI patients who are socially isolated or clincally depressed.
Scientists will be measuring biological risk factors (e.g., lipids, adiposity,
coagulation factors) and possible subclinical markers of disease (e.g. carotid
intima-media thickness, coronary calcification); 34 percent of the participants
are black.
The Institute supports investigator-initiated research
on the role of race and ethnicity, psychosocial and environmental factors, and
low SES in the development of CHD. Scientists are investigating the
contribution of biobehavioral factors (hostility, anxiety, and heightened
cardiovascular reactivity to stress) in the etiology, pathogenesis, and course
of CHD. Racial differences in stress-induced physiologic responses also are
being examined. Other investigators are focused on the relationships of
psychosocial stress, sleep disordered breathing, and nocturnal physiological
measures with emerging risk factors and subclinical CVD; 50 percent of the
participants are black.
Investigators are interested in the effects of race
and psychosocial factors, such as hostility, on glucose metabolism. A study was
initiated to determine how hostility is differentially related to glucose
metabolism in blacks and whites. Research findings may increase understanding
of the differences in the etiology of diabetes in the two groups.
Additional areas of interest include the genetic basis
of aggression and the relationships between risk-promoting variables
(psychosocial stress, smoking, poor diet, physical inactivity); presumed
mediating variables (sympathetic nervous system activity and insulin
metab-olism); and CHD risk factors. Fifty to sixty percent of the participants
are black or Hispanic.
Diabetes
Diabetes mellitus is a strong risk factor for CVD. Its
prevalence is increasing due to the significant increase of obesity and
physical inactivity in the population, espe-cially among blacks, Hispanics, and
American Indians. To address this growing problem, the Institute is sup-porting
an investigator-initiated study on defining the relationship between the
overall dose of endurance exer-cise training and the corresponding response of
meta-bolic risk factors in an overweight and obese biracial female population.
Another study will determine if adolescents with type 2 diabetes have a high
risk of developing clinical CVD in their late 20s or 30s. Scien-tists are using
noninvasive imaging techniques for detecting subclinical atherosclerosis to
measure CVD development in a predominatly black population.
Hypertension and diabetes are major contributors to
CVD and occur disproportionately in blacks. In particular, black women seem to
have earlier disease onset and poorer outcomes. Scientists are investigating
the link between hypertension and type 2 diabetes and the relative excess of
androgen found in black women to determine whether insulin resistance, excess
androgen, and endothelial dysfunction contribute to accelerated vascular injury
in blacks.
Treatment
The NHLBI supports clinical trials to determine the
benefits of various strategies to reduce CVD among patients with diabetes or
treat patients with coronary artery disease and diabetes.
- ACCORD (see Chapter
11): To evaluate the benefits of different therapies to reduce CVD in type
2 diabetes; more than one-third of the participants are minorities.
- BARI 2D (see Chapter 9):
To evaluate whether urgent revascularization offers an advantage over medical
therapy in patients with coronary artery disease and diabetes. In addition, for
a given level of glycemic control, to determine whether insulin-providing drugs
offer advantages or risks compared to insulin sensitizers (drugs that enhance
insulin action); 33 percent of the participants are from minority
populations.
- SANDS (see Chapter 9):
To compare intensive treatment (pharmacologic agents, such as ACE inhibitors
and simvastatin for high blood pressure and LDL cholesterol) to conventional
treatment in 488 American Indians with diabetes, ages 40 or older. The primary
outcome measure is change in carotid intimal-medial thickness.
An investigator-initiated study will evaluate the
effectiveness of a multiple risk factor intervention (diet, exercise, stress
management, social support, smoking cessation) targeting postmenopausal
Hispanic women with type 2 diabetes.
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Lung Diseases
The NHLBI supports research on a number of lung
diseases, such as asthma, sarcoidosis, and TB, which disproportionately affect
minorities. The following section provides examples of research to address
health disparities in lung diseases.
Asthma
Etiology and
Pathophysiology
The NHLBI has initiated several studies to determine
the etiology and pathophysiology of asthma.
- Cellular and Molecular Mechanisms of Asthma (see
Chapter 9): To delineate the cellular and molecular
mechanisms underlying acute and chronic asthma through basic and clinical
investigations.
- Severe Asthma Research Program: To determine the
mechanistic basis for severe asthma and to determine how it differs from
mild-to-moderate asthma. Several of the projects have strong minority
participation.
- Asthma Exacerbation: Biology and Disease
Progression: To elucidate the biologic mechanisms of asthma exacerbation
pathobiology and resolution and to determine their effect on lung function,
physiology, and disease state; 27 to 56 percent of the study participants will
come from various minority populations.
The Institute also supports investigator-initiated
projects on the etiology and pathophysiology of asthma. One study is using
genomic screening to search for the genetic basis of asthma in a homogeneous
Hispanic population in Costa Rica; another study is seeking to identify
positional gene candidates for airway hyperresponsiveness and compare their
association with asthma between two asthmatic groups: a white population on
Tangier Island, VA, and a black population from Barbados; and a third study
seeks to establish the link between specific genotypic variants and phenotypic
markers, and to elucidate the immunological pathways that contribute to asthma
severity in blacks from Harlem.
Latinos carry a disproportionate burden of asthma, yet
few investigators studying the genetics of asthma have focused on this group,
partly due to the complexity of the Latino gene pool. A recently initiated
study is developing and testing new methods to correct for population
stratification due to racial admixture, a key problem confounding genetic
studies in the Latino population. The project focuses on data from the
NHLBI-supported Genetics of Asthma in Latino Americans (GALA) to assess
population stratification.
Occupational and environmental factors are known to
trigger asthma symptoms. An investigator-initiated study is focusing on
understanding the mechanisms by which occupational or environmental factors
trigger the onset of asthma among low-income, urban blacks and Hispanics.
Another study is examining the association of early exposure to endotoxin
(which appears to promote the development of the immune system), nitrogen
dioxide, and aeroallergens (which trigger asthma exacerbations); obesity;
physical inactivity; and environmental tobacco smoke on the prevalence,
persistence, and incidence of asthma in black and Hispanic children enrolled in
inner-city Head Start programs.
Circadian change in airway function is an important
aspect of asthma, as more than 70 percent of deaths and 80 percent of
respiratory arrests occur during sleep. Forcusing on nocturnal asthma,
researchers are investigating the mechanisms that cause the changes in airway
function that lead to exacerbation of symptoms; 36 percent of the population is
minority.
Treatment and Control
The Institute has initiated research to identify
optimal drug strategies for treatment and management of asthma. Because the
burden of asthma disproportionately affects minority children, it is important
for them to be well represented in clinical trials.
- ACRN (see Chapter 11):
To support an interactive network of asthma clinical research groups to conduct
studies of new therapies for asthma and disseminate findings to the practicing
community. Overall, 37 percent of the participants are from minority
populations.
- CAMP (see Chapter 11):
To determine whether inhaled corticosteroids are safe and effective for
long-term treatment of children with mild-to-moderate asthma. The therapy
proved more effective than nonsteroidal anti-inflammatory medication and
significantly reduced airway hyperresponsiveness. The only side effect was a
transient slowing in growth rate during the first year of treatment; 31 percent
of the participants were minorities.
- CARE (see Chapter 11):
To support a network of pediatric clinical care centers to determine optimal
treatment and management strategies for children with asthma. The studies
considered by the network will attempt to customize therapy based on specific
asthma phenotypes and genotypes; 30 percent of the population will be
minorities.
- Centers for Reducing Asthma Disparities (see
Chapter 9): To support partnerships between
minority-serving institutions and research-intensive institutions to conduct
studies on causes of and corrections for disparities in asthma among
racial/ethnic and low SES populations. Reciprocal training is encouraged to
ensure culturally sensitive projects and enhance research capabilities.
The Institute is also supporting
investigator-initiated studies focusing on finding effective treatment for
various populations. One study is examining the effect of steroids on enhanced
alpha-adrenergic vascular responsiveness in asthma; 77 percent of the
participants are minority. Another study is using preexisting, well-
characterized asthma patient cohorts to identify genetic variants that can
predict therapeutic response to asthma drugs. Scientists are interested in the
influence of race/ethnicity on the genetic factors associated with asthma
therapeutic responses.
Translational Activities
Ensuring full use of modern asthma treatment
strategies is an important goal of the NHLBI. The Institute is supporting an
investigator-initiated study to determine the effectiveness of an intervention
that is removing barriers to preventive care to improve asthma management and
lower asthma morbidity. Scientists are using a Breathmobile to deliver asthma
screening to black children attending Head Start Programs and a special
consultation service to communicate directly with the parents about asthma
management. Another study among low-income, inner-city children with asthma
attending preschool is testing a bilingual intervention program to improve
asthma management; 60 percent of the participants are Hispanic and 40 percent
are black.
Additional studies to improve asthma management among
minority groups include a study to determine whether shared decision making in
choosing asthma therapy between patients and physicians improves adherence in a
patient population consisting of 82 percent minorities and a study to test
whether individualized interventions will improve asthma management in a black
and Hispanic population. A third study seeks to improve asthma management by
teaching children with asthma to recognize symptoms of the presence of airflow
obstruction; 42 percent of the participants are black and 6 percent are
Hispanic.
Two randomized controlled trials are being conducted
among patients recruited at the time of an emergency department visit for
asthma exacerbation. One study is testing an intervention to enhance knowledge,
self- efficacy, and asthma-related social support; 40 percent of the patients
are minority. The other focuses on young black children recruited at the time
of an emergency department visit for asthma exacerbation. Investigators are
testing the effectiveness of an intervention strategy that includes case
management, telephone contacts, and a monetary incentive to increase follow-up
visits to primary care providers.
Three studies are evaluating the benefits of working
with public school systems to improve adherence to asthma management. In
Birmingham, scientists are evaluating the impact of school-based supervised
asthma therapy on asthma exacerbations in a predominately black population with
moderate-to-severe asthma. In New York, they are testing the ability of an
intervention that includes in-school intensive asthma education to 9th- and
10th-grade students who have persistent asthma and intensive asthma education
for their community physicians to improve asthma morbidity; 90 percent of the
participants are black. In Detroit, investigators are developing and evaluating
computer-based instructions and peer counseling for black teens with
asthma.
Chronic environmental tobacco smoke exposure,
particularly from parental smoking, is associated with more severe asthma,
increased incidence of emergency department visits, life-threatening attacks,
and prolonged time to recovery from asthma exacerbation requiring
hospitalization. A study is being conducted to evaluate an intervention
tailored to parental stage of change regarding smoking practice, to reduce
asthma crisis care used by children with persistent asthma.
Education
The NAEPP (see Chapter 2)
has developed easy-to-read materials on asthma treatment and control directed
to audiences with low literacy.
- Facts About Controlling Your Asthma
- El asma: Cómo Controlar Esta
Enfermedad.
Sarcoidosis
Sarcoidosis is an inflammatory disease of unknown
etiology characterized by persistent granulomas with damage to surrounding
tissue. The Institute has initiated a program to determine the
immunopathogenesis of granulomatous inflammation found in sarcoidosis,
including the role of predisposing factors, the immune components involved in
the formation of granulomas, and the defective regulatory immune response.
Investigator-initiated studies on the causes of
sarcoidosis include a study to identify genes linked to sarcoidosis
susceptibility in blacks and to determine if hereditary susceptibility
predisposes blacks to sarcoidosis, and a project to elucidate the mechanisms
involved in the immunologic and inflammatory processes that ultimately lead to
end-stage fibrosis in progressive pulmonary sarcoidosis; 50 percent of the
participants are black.
Sleep Disorders
Etiology
Sleep apnea is a common disorder that
disproportionately affects blacks and is associated with an increase risk of
CVD; it is particularly prevalent in heart failure patients. An
Institute-initiated program is assessing the interrelationship between sleep
disorders and heart failure, and the mechanisms leading to cardiovascular
stress when the two interact.
The NHLBI supports research on the etiology,
pathophysiology, and consequences of sleep-disordered breathing (SDB), a
condition characterized by repetitive interruptions in breathing.
- Neurobiology of Sleep and Sleep Apnea (see
Chapter 9): To integrate molecular, cellular, and
genetic approaches to sleep control with clinical investigation on the etiology
and pathogenesis of sleep disorders, particularly sleep apnea. One study has 39
percent minority participation.
- Sleep Heart Health Study (see
Chapter 9): To determine the degree to which sleep
apnea is an independent or contributing risk factor for the develop of
cardiovascular or cerebrovascular disease; 23 percent of the participants are
from various minority and ethnic populations.
The Institute also supports a wide spectrum of
investigator-initiated projects to elucidate cardiovascular and other health
consequences of SDB. Ongoing studies in various community settings are
assessing the health risks of SDB within specific ethnic populations, including
blacks, Hispanics, Asians, and American Indians. A study of sleep in black
families will investigate whether sleep problems contribute to diabetes, and
the potential relationship to CVD. Characterization of how SDB occurs within
family groups is helping to identify potential genetic risk factors that may
allow early iden-tification and treatment of high-risk individuals. A
community-based study of sleep in Hispanics is assessing the prevalence and
awarenesss of sleep disorders.
Treatment and Control
The NHLBI has initiated a multisite clinical trial to
find effective treatments for sleep apnea.
- APPLES (see Chapter
11): To determine whether continuous positive airway pressure is an
effective treatment for excessive daytime sleepiness and cognitive impairment
associated with moderate-to-severe SDB; 30 percent of the participants are
minority.
An investigator-initiated study will assess the impact
of continuous positive airway pressure on functional outcomes in milder
obstructive sleep apnea. The minority participation at U.S. sites is 46
percent, but is 13 percent of the total minority participation when Canadian
sites are included.
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Tuberculosis
Etiology
The Institute has initiated genetic studies to
characterize genes associated with TB susceptibility and host immune responses
to infection.
- Genetic Aspects of Tuberculosis in the Lung: To
identify genes or families of genes that determine resistance and
susceptibility to mycobacterial infection, virulence, latency, reactivation of
TB, and resistance to antituberculous drugs. A large number of the participants
being recruited are from minority populations.
Treatment and Control
The NHLBI supports a number of investigator- initiated
studies focused on understanding the relationship of the immune system to TB.
Most of the patients are from minority populations with HIV. One group is
seeking to identify the correlates of protective immunity in a Mexican American
population in order to aid development of anti-TB vaccines. Another group is
conducting a Phase I safety trial on a vaccine with a patient population
consisting of 85 percent minorities. A third group is examining the role of
interferon-gamma in the pathogenesis of TB among Hispanics with and without
HIV. A fourth group is identifying and characterizing host factors that
predispose Asians to develop TB. In predominately minority populations in the
United States, a new study will compare the effectiveness of adding aerosolized
interferon-gamma to the usual treatment regimen for advanced TB.
The NHLBI also supports research to improve TB control
among minority populations. One project is evaluating educational strategies to
improve adherence to medication regimens and regular clinic visits among
Hispanic adolescents infected with TB. Another study, located in the Harlem
community of New York City, is testing a new strategy to promote adherence to
therapy among inner-city TB patients. Both programs are outgrowths of
behavioral research programs begun by the Institute in 1995.
Education
Building on the foundation laid by the Tuberculosis
Academic Award program, the NHLBI is supporting a consortium of five TB
curriculum centers.
- TB Curriculum Coordinating Center: To strengthen,
expand, and increase access to the best ongoing educational and training
opportunities in TB for medical, nursing, and allied health schools, especially
those that provide primary care to communities where TB is endemic and the
population is at high risk of developing TB.
Blood Diseases
The NHLBI supports basic and clinical research on SCD
and Cooley’s anemia with the goal of curing the disorders or improving
patient care.
Sickle Cell Disease
Basic Research
SCD is an inherited blood disorder that produces
chronic anemia, periodic episodes of pain, and end organ damage. It affects
about 1 in 500 blacks and 1 in 1,000 Hispanics. Since 1972, the NHLBI has
supported an extensive research program to improve understanding of the
pathophysiology of SCD and identify better approaches for its diagnosis and
treatment and for prevention of complications.
- Comprehensive Sickle Cell Centers Program (see
Chapter 9): To provide a multidisciplinary and
multilevel research approach to expedite develop-ment and application of new
knowledge into improved diagnosis and treatment of SCD and prevention of its
complications.
- Reference Laboratory To Evaluate Therapies for SCD
(see Chapter 9): To use a battery of standard-ized
tests for preclinical evaluation of potential new therapeutic agents for
SCD.
- Genetic Modifiers of Single Gene Defect Diseases:
To identify genetic factors that predisposes patients with SCD to develop
specific end-organ complications and to experience more or less severe clinical
courses. Identification of such genetics factors will reveal new targets for
developing therapy individualized to specific complications of SCD, thus
leading to improved outcomes and increased life expectancy for patients.
- Mechanisms of Fetal Hemoglobin Gene Silencing for
Treatment of Sickle Cell Disease and Cooley’s Anemia: To identify
mechanisms of fetal hemoglobin gene silencing during normal human development
and mechanisms of variable silencing in adults, and to develop therapeutic
approaches to inhibit silencing. A renewed effort to understand the molecular
basis of fetal hemoglobin silencing will facilitate the development of new
gene-based therapeutic approaches to inhibit silencing, in order to increase
fetal hemoglobin in red blood cells, and thus to cure beta-chain
hemoglobinopathies such as SCD and Cooley’s anemia.
- Molecular Screening Assay Development for SCD: To
support the development and adaptation of biological assays for automated, high
throughput screening of compounds that can potentially be used to improve the
understanding of the biology of SCD and provide inroads toward new agents for
SCD treatments.
- Pulmonary Complications of Sickle Cell Disease: To
stimulate translational research on the pulmo-nary complications of SCD. The
initiative will stimulate collaborative research between investi-gators in
hematology and pulmonary science that combine basic and clinical approaches. It
includes research on the major known pulmonary compli-cations of SCD due to
acute chest syndrome, pulmonary hypertension, and oxyhemoglobin
desaturation.
Hydroxyurea is used to treat patients with SCD. It can
prevent some of the vasoocclusive complications of the disease, an effect due
in part to increase fetal hemoglobin (HbF) production. The treatment can
improve the clinical course of the disease and prolong survival in some
patients. Investigator-initiated studies are seeking to discover genes that
regulate HbF level and HbF response to hydroxyurea.
In 2005, the NHLBI cosponsored two working groups with
the NIH Office of Rare Diseases and the National Human Genome Research
Institute. The first, entitled “An NIH Strategic Plan for the Development
of Globin Gene Therapy for Treatment of Sickle Cell Disease and Cooley’s
Anemia,” brought together leading investigators in the globin gene
transfer field as well as patient advocates, the FDA, and industry
representatives to discuss how the NHLBI can best facilitate translation of
hemoglobin gene transfer into clinical trials for SCD and beta-thalassemia. The
other, “Barriers to Late-Stage Drug Development for
Hemoglobinopathies,” brought together experts from the NIH, drug
companies, contract research organizations, and academia to evaluate options
for the best ways to expedite drug development for hemoglobin disorders and
other rare diseases.
The NHLBI addressed another area of serious concern
for sickle cell patients, in 2005, by supporting a meeting on the “Renal
and Urologic Complications in Sickle Cell Disease.” The working group
assembled hematologists, renal specialists, and urologists to discuss the
research needs and opportunities associated with the renal and urologic system
problems in patients with SCD.
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Clinical Research
The NHLBI is committed to finding improved treatments
and ultimately a cure for SCD and other hemoglobinopathies. Institute-initiated
studies have begun to yield therapies that will alleviate the symptoms of
sickle cell anemia and procedures that should ultimately provide a cure.
- Multicenter Study of Hydroxyurea (MSH)
Patients’ Follow-up (see Chapter 11): To
determine the toxic effects of long-term hydroxyurea use in the patients who
participated in the adult hydroxyurea clinical trial that ended successfully in
1995; 100 percent of the participants were black. A significant finding of the
study was that patients who took hydroxyurea for 9 years experienced a 40
percent reduction in deaths.
- BABY HUG (see Chapter
11): To assess the effectiveness of hydroxyurea in preventing onset of
chronic organ damage in young black children with sickle cell anemia. At
baseline, this trial has demonstrated that spleens and kidneys are already
damaged by 1 year of age.
- SWITCH (see Chapter 9):
To demonstrate that hydroxyurea and phlebotomy can maintain an acceptable
stroke recurrence rate and significantly reduce hepatic iron burden in
comparison to transfusion plus chelation in children who have had prior overt
stroke.
- Multicenter Neurocognitive and Neuroimaging Study
in Adult Sickle Cell Disease: To assess baseline neurocognitive function and
neuroimaging abnormalities in adults with SCD and to randomize patients
identified with subnormal neurocognitive scores to receive 6 months of
transfusion versus standard care, followed by reassessment of baseline
neurocognitive function.
The NHLBI is supporting several transplant-related
clinical studies that are seeking to reach minority populations. To ensure
increased awareness and equitable opportunities for participation, the studies
support bilingual transplant center personnel and provide public Web pages,
educational materials, and informed consent documents in Spanish, Japanese,
Korean, Chinese, and Vietnamese. In addition, focus groups have been held to
identify barriers to participation.
- Blood and Marrow Transplant Clinical Research
Network (see Chapter 11): In collaboration with the
NCI, to promote the efficient comparison of innovative treatments and
management strategies for patients undergoing blood or marrow transplan-tation.
The Network has developed strategies and implemented procedures to enroll
patients from minority groups.
The Cord Blood Stem Cell Transplantation (COBLT) Study
was just completed in 2005. The COBLT bank contained more than 8,000 cord blood
units; approximately 57 percent were from minority donors. Approximately 30
percent of the COBLT transplant patients were minority.
Each year in the United States approximately 1,500
children are diagnosed with sickle cell anemia, and 30 to 50 children with
thalassemia. A recent retrospective analysis of 44 children who were
transplanted with sibling cord blood for SCD or thalassemia showed that matched
sibling cord blood transplantation offers the potential for a cure.
Transplants for patients with sickle cell anemia are
performed at many centers across the United States, with few performed at a
single center. To promote a unified strategy for sharing data, the NHLBI, with
support from the National Center for Minority Health and Health Disparities,
awarded a grant supplement to the International Bone Marrow Transplant Registry
to collect data on demographics and outcomes of patients with sickle cell
anemia who received a blood or marrow transplant.
Outcomes Research
In 2002 and 2003, the NHLBI held a workshop and three
working groups to address the needs of adult SCD patients. One high priority
recommendation was to develop and validate a health-related quality of life
instrument specifically for adults with SCD. Subsequent working groups of
consumers, clinicians, and researchers identified issues that are unique to SCD
patients, such as interactions with the health care system and the economic
burden of living with SCD. In 2005, the Institute awarded a 3-year contract to
develop a health-related quality of life questionnaire to be used in clinical
studies.
Education
The NHLBI has developed a number of publications on
SCD that target minorities.
- Datos Sobre La Anemia Falciforme (Facts
About Sickle Cell Anemia)
- Fact Sheet: Hydroxyurea in Pediatric Patients
With Sickle Cell Disease
- Facts About Sickle Cell Anemia
- Patient Fact Sheet: The Multicenter Study of
Hydroxyurea in Sickle Cell Anemia (MSH)
- Management and Therapy of Sickle Cell
Disease.
Cooley’s Anemia
Cooley’s anemia is an inherited disorder of red
blood cells that affects primarily people of Mediterranean, African, Southeast
Asian, Chinese, and Asiatic Indian origin. In 2000, the Institute initiated a
program to establish a network of clinical research centers to evaluate new
therapeutic agents. Research efforts include developing oral chelators to
remove iron overload caused by repetitive transfusion therapy, testing drugs to
enhance fetal hemoglobin production, and examining gene therapy approaches to
cure the disease. A registry with samples has been established to foster
genomic and proteomic studies. International collaborations have also been
establised.
- Thalassemia (Cooley’s Anemia) Clinical
Research Network (see Chapter 11): To establish a
group of clinical centers to accelerate research in the management of
thalassemia, standardize existing treatments, and evaluate new ones.
Investigator-initiated studies include efforts to
develop oral chelators to remove the iron overload caused by repetitive
transfusion therapy; exploration of hormone therapy for patients surviving into
their teens; testing of drugs intended to enhance fetal hemoglobin production
(hydroxyurea, butyrate, and decitabine); investigation of gene therapy
approaches to cure the disease; prevention of bone diseases; optimum treatment
of hepatitis; treatment of heart disease and iron overload; noninvasive ways of
measuring iron burden; and efforts to improve the safety of the Nation’s
blood supply.
Women’s Health Initiative
Coronary heart disease, cancer, and osteoporosis are
the most common causes of death, disability, and impaired quality of life in
postmenopausal women. The WHI (see Chapters 2 and
11) is addressing the benefits and risks of HT,
changes in dietary patterns, and calcium/vitamin D supplements in disease
prevention. Several of the centers have recruited primarily minority
populations: blacks, Hispanics, Asians, Pacific Islanders, and American
Indians. The Clinical Trial recruited 12,607 minorities and the Observational
Study recruited 15,658. Overall, of the 161,809 postmenopausal women recruited
into the WHI, 17 percent were minorities.
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