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Medical News & Perspectives
January 5, 2000

New Heart Study a Legacy for the Future

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JAMA. 2000;283(1):38-44. doi:10.1001/jama.283.1.38-JMN0105-2-1

Jackson, Miss—The leaders conducting a new observational longitudinal study of cardiovascular disease in African Americans living in Mississippi are focusing on legacies.

They hope that data to be gathered in the Jackson Heart Study will allow the 6500 participants to leave a "legacy of health" for future generations. In addition, they believe the study will enhance the community's knowledge of cardiovascular disease, identify risk factors, and develop new treatments for heart disease in African Americans. It should also create an infrastructure to enhance research and attract students to careers in public health and epidemiology at minority schools by combining the resources of the three principal institutions conducting the study—Jackson State University, University of Mississippi Medical Center (UMMC), and Tougaloo College.

And while these initiatives are meant to create positive legacies, the study investigators also hope to reverse the effects of other legacies, such as the Tuskegee Syphilis Study and the cynicism it instilled in African Americans, making them hesitant to participate in medical research.

Herman A. Taylor, MD, director of the Jackson Heart Study, said the investigators chose the legacy theme because it touches on all the areas they hope to improve.

Herman A. Taylor, MD, director of the Jackson Heart Study, which has "legacy" as its theme. (Photo credit: Jackson State University)

Herman A. Taylor, MD, director of the Jackson Heart Study, which has "legacy" as its theme. (Photo credit: Jackson State University)

"It was coined to draw attention to the fact that for African Americans there has been a legacy of ill health," Taylor said. "For decades we've talked in terms of disparity in health statistics between African Americans and the rest of the population—African Americans always have the worst cardiovascular disease statistics. We want to change that. There's no reason for that to persist except for a lack of knowledge and a lack of interventions.

"A lot of people see this [participation] as a gift to a younger generation. The findings of the Jackson Heart Study will result in effective interventions that will improve cardiovascular health for our children."

A southern framingham

The study's leaders hope they are creating the "Framingham of the South." The Framingham Heart Study, begun in 1948, is an ongoing observational study of the population of Framingham, Mass, that is credited with uncovering some of the basic risk factors for cardiovascular disease, such as hypertension, elevated blood cholesterol levels, and cigarette smoking. No such study on an equivalent scale has been conducted among African Americans, until now.

Researchers with the Jackson Heart Study, beginning in the late summer of 2000, will start collecting data on the randomly selected participants. The enrollees, ages 35 to 84 years, will be given a 4-hour initial examination at UMMC. They will undergo a physical examination, have their blood tested, and take part in a series of interviews discussing such subjects as alcohol and tobacco use, family history, and dietary habits. They will be reexamined every 3 years for the length of the study. The initial funding of $32 million by the National Institutes of Health's National Heart, Lung, and Blood Institute and the Office of Research for Minority Health is for 5 years, but study leaders hope the research will extend for decades.

Robert Garrison, MD, director of the Jackson Heart Study Coordinating Center, is eager to begin the research. "Over time you get a glimpse of how many people develop whatever you're interested in. That's important because it speaks to the burden of disease and how frequently new cases occur in the population," he said. "In African Americans, none of that is known. For European Americans, there is study after study where you can, in exquisite detail, know what the expected new case rate is for myocardial infarction, stroke, hypertension, diabetes, right down the list. We know African Americans develop these things, unfortunately, at a much higher rate. However, we don't know what the rate is. This study will tell us that."

Robert Garrison, MD, director of the Jackson Heart Study Coordinating Center. (Photo credit: Jackson State University)

Robert Garrison, MD, director of the Jackson Heart Study Coordinating Center. (Photo credit: Jackson State University)

This knowledge is critical because cardiovascular health statistics for African Americans are considerably worse than those for whites. In 1997, African American men had a death rate from diseases of the heart of 236.2 per 100,000. White men had a death rate of 168.7 per 100,000, according to statistics published by the Centers for Disease Control and Prevention. For African American women, the 1997 death rate from heart disease was 147.6 per 100,000 while for white women it was 90.4 per 100,000.

Education and modification

But the Jackson Heart Study isn't just about gathering epidemiological data. A critical component of the study, and one that may compromise the research aspects to a degree, is educating the participants and helping them modify their cardiovascular risks, said Dan Jones, MD, the principal investigator from UMMC.

Dan Jones, MD, Jackson Heart Study principal investigator from the University of Mississippi Medical Center. (Photo credit: Jackson State University)

Dan Jones, MD, Jackson Heart Study principal investigator from the University of Mississippi Medical Center. (Photo credit: Jackson State University)

"We're doing an observational study, so we're collecting information from people. In theory it's not a component of the study to provide medical care," Jones said. "Yet we have huge moral and ethical considerations to share information with people, to see that they have access to getting treatment for the problems we identify."

Researchers will provide information about heart disease to each participant at the conclusion of the initial examination. A follow-up letter with the results of the clinically important parts of the examination, with advice attached, will be mailed to enrollees. Recommendations to see their physicians or to visit an on-call physician who has volunteered to treat participants who have no physician will be made to those requiring more immediate medical treatment.

To ensure a successful start, the leadership initiated an effort to tell the community what the Jackson Heart Study is about and why people should join if asked, said Joseph Cameron, PhD, the study's community mobilization director.

Joseph Cameron, PhD, community mobilization director for the Jackson Heart Study. (Photo credit: Jackson State University)

Joseph Cameron, PhD, community mobilization director for the Jackson Heart Study. (Photo credit: Jackson State University)

"We all know the abuses in medical research, and we know some of the apprehension African Americans experience when it comes to participating in any kind of research," Cameron said. "So we want to make sure that everything done with the Jackson Heart Study is really for the benefit of African American people. And that way, if they have faith in what we're doing in the long term, they will support the study."

The community mobilization efforts have centered on distributing literature in spots where African Americans socialize, work, and shop; running a media campaign; and establishing community ties.

Study coordinators are also meeting with civic leaders such as clergy, elected officials, and business heads to solicit their help in getting the word out and assisting participants by, for example, granting time off from work to undergo the examinations, once the study is under way.

To get the 6500 participants, the heart study is enrolling three different African American populations during a 3-year period.

The first 2500 come from participants in an earlier, ongoing, NIH-funded research project called Atherosclerosis Risk in Communities (ARIC). These participants were randomly selected for ARIC. The next group recruited will be 2000 randomly selected family members of the current ARIC cohort. The final 2000 enrollees will be randomly selected from the greater Jackson metropolitan area of around 365,000 people.

The selection process may raise some concerns about its true randomness, but study leaders said it's designed this way to, they hope, create a high retention rate.

Is race meaningful?

The study is kicking off just as questions are being raised in certain research circles as to whether racial identity is medically meaningful. Critics of race-based research say there is no genetic relevance to racial designation and that differences in health have more to do with environmental and other factors. But as this issue is debated, the Jackson Heart Study's race-specific focus remains valid, said Jones. "In our society there are differences in health outcomes in people who identify themselves as African Americans," he said. "So in our society it makes sense to use some of the resources we have to try to solve the health problems of those who identify themselves as African Americans."

Another element is the cooperation between three major institutions in Jackson that haven't always worked together, said Bettye Ward Fletcher, PhD, the initial principal investigator and interim president of Jackson State. Jackson State will manage the data coordinating center, the examinations will be performed at the medical center, and Tougaloo College will handle the educational aspect by training African American students for careers in public health and epidemiology.

"I think it represents a wonderful opportunity for the medical center [part of a historically white university] to partner with two historically black institutions," Fletcher said. "It sends a message to the community here in Mississippi that, given our history, we are working together to solve a common problem here in our state."

The first peer-reviewed articles using Jackson Heart Study data probably won't appear for another 5 years, although some articles may be published looking at the study's objectives and recruitment efforts. And while the Framingham study is entering its 52nd year, the leaders of the Jackson study are simply pleased to get it going.

"This is something that should have happened, clearly, long before now. I'm just glad to be a part of it," Garrison said.

Added Cameron, "It would make me feel better personally if I knew that after I'm gone, African Americans can be examined by local physicians using knowledge gathered from the Jackson Heart Study database. I'm hoping this study will identify unique factors, even if they're regional, that will help my children and their children."

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