Ann Powell entered her name, birth date, gender, ethnicity, email address on a website and answered five questions about whether she had a family history or been diagnosed with mild cognitive impairment or dementia.
In less than five minutes, the Atlanta real estate manager had become one of thousands of people who could participate in studies as part of the Alzheimer’s Prevention Registry.
The registry, launched in May, is part of a collaborative effort between the Banner Alzheimer’s Institute and scientists across the world to conduct research in Alzheimer’s prevention.
Both Powell’s parents and mother-in-law died within years of each other of the debilitating disease.
She was reading a magazine article last year when she discovered the registry.
“I was thrilled,” Powell said. “I know that prevention is the only hope for all those at risk of getting Alzheimer’s. I looked them up online the next day and registered.” Jessica Langbaum, a scientist and associate director of the Alzheimer’s Prevention Initiative, is hoping 250,000 more will do the same, 100,000 of those by the end of June.
The registry, she said, is an easy way for people who’ve been affected by the disease to get involved.
“They become part of a community that gets the latest news on Alzheimer’s prevention and, as study opportunities become available, they can find out how to get involved if they want to,” Langbaum said. “This model has been done for breast cancer really well. They are able to fill a research study that used to take a year to recruit for in a month now.
”We need the same thing for Alzheimer’s disease research and it’s a tool for researchers across the country. We don’t anticipate everybody will want to participate in studies, but there is power in numbers.’’
In general, it can take as many as 30,000 applicants to fill a 2,000-person trial, Langbaum said. That can delay research for up to two years.
Alzheimer’s, one of the top 10 causes of death, has no cure.
Now that it is clear the disease can start wreaking havoc in the brain years before symptoms appear, Langbaum said it’s critical that prevention become the focus of any research.
“We’ve held for a very long time that we have to find a prevention therapy for the disease,’’ she said. “The numbers are skyrocketing, so we have to be able to conduct these trials in a faster, more efficient way.“
To do that, she said, recruiting people who are at high risk of developing Alzheimer’s, like Powell, is critical.