DURHAM -- Urged on by a veteran of the 1960s civil rights movement, more than 150 older blacks in North Carolina have joined a Duke University drive to enlist more minorities in Alzheimer's prevention research.
Henry Edmonds, 66, a Baptist minister, works with Duke's Bryan Alzheimer's Disease Research Center to overcome longstanding reluctance by blacks to take part in medical studies. Edmonds has succeeded in signing up participants for a long-term Alzheimer's registry by emphasizing Duke's goal of preventing the memory-robbing brain disorder, which strikes blacks at a disproportionately high rate.
"They want to know there is something coming back to the community," said Edmonds, who attended Shaw University in the 1960s and recalls being thrown in a segregated Raleigh jail during a downtown protest. "They want to know that their information is going to be secure and that they aren't going to be seen as guinea pigs."
Previous studies of Alzheimer's disease have not included representative numbers of blacks. Research has attributed that trend to memories of efforts such as the notorious Tuskegee syphilis research -- which for decades denied treatment of the disease in black males to study its long-term effects -- and the long-lived North Carolina program to sterilize black women with mental disabilities.
"People who are in my age group remember and are very hesitant about participating in any kind of a study," said Etheldreda Guion, 68, a black Durham resident who is a former lab worker, public-school science teacher and assistant principal.
"Because of my background in science and the fact that I did work at Duke for six or seven years, I was more open to experimentation," she said.
As a coordinator of the center's African-American Community Outreach Program, Edmonds assisted a successful recruitment drive in Jacksonville and is still talking up the registry in Durham and the Triangle. Efforts have included health fairs in churches and one-on-one talks that went beyond previous efforts to enlist black participants.
"Researchers were not prepared to go into the African-American community and talk to people on a one-to-one basis," Edmonds said."Too, there's kind of a gap of cultural competence in terms of being aware of how to approach them and talk to them."
Modeled on similar efforts used in cancer research, the registry of hundreds of people who could be quickly available for trials is key to Duke's efforts to develop more effective preventive therapies for Alzheimer's, said Kathleen Welsh-Bohmer, a Duke neuropsychologist and director of the research center. Current treatments at best slow the disease's progression.
Seizing the moment
Recent studies at Duke have shown that two key genes affect peoples' risk of developing the disease and when it may occur.
The best way to measure how well therapies work is to test them when patients are most likely to develop the disease, researchers say.
"It's where we think people are at high risk of developing Alzheimer's disease in a year or two," Welsh-Bohmer said.
Participants have to be 55 and free of the disease but committed to efforts to stop its growth. They do not have to promise to take part when reached for future studies, which will measure the effects of drug therapies, changes in lifestyle and other treatments.
"I think my hope would be that there is finally a cure for Alzheimer's," said Guion, who makes use of Duke's related education efforts on dementia. "Personally, I get to learn a lot about how to keep myself flexible, to keep my brain involved."
The statewide community outreach program, known as AACOP, works to bring culturally appropriate services and resources to blacks with dementia. It works with black faith-based groups and others to deliver services and to develop trust in the community for the center's research programs.
"When I go to health fairs, I talk about the fact that we are involved in studies that deal with the prevention of Alzheimer's disease," Edmonds said.
"I highlight the fact that this is very new."
