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Ann Powell entered her name, birth date, gender, ethnicity, e-mail address and answered five questions about whether she had a family history or been diagnoses with mild cognitive impairment or dementia.
In less than five minutes, the Buckhead real estate manager had become one of thousands of people who have signed up for the new 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 cutting edge Alzheimer’s prevention studies.
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 people to fill a 2,000-person trial, Langbaum said. That can delay research for up to two years.
As detection outpaces treatment, that has become untenable, she said.
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.
Langbaum said that Banner has been carefully planning for this initiative for years, but it wasn’t until the fall of 2009 that the team invited their academic and industry colleagues to a gathering to discuss how to conduct prevention treatment trials.
Last May, Banner received a $16 million grant from the National Institute on Aging to conduct its first trial in people destined to develop Alzheimer’s because they carry rare genetic mutations for the disease.
Details of the study — designed to look at whether the drug, crenezumab, can prevent memory lose — are still being worked out. But, Langbaum said, the first participants will be enrolled in the second half of 2013. The study may take up to five years to complete. The Alzheimer’s Prevention Initiative is planning other studies in the coming years focused on other at-risk groups, and other research groups are planning complementary studies.
“We call this the new era in Alzheimer’s prevention research,” Langbaum said.
For years, Ann Powell has lived with the fear that she might one day be diagnosed with Alzheimer’s. But this, she said, gives her hope.
“If great strides aren’t made in prevention efforts, I believe this will turn into an epidemic, not only devastating thousands of families, but probably eventually crippling the health-care system,” Powell said. “On a personal note, I truly don’t want my one son to be subjected to watching me deteriorate in front of him.”
Powell said she first noticed something was wrong with her mother, Harriet Arrington Stapleford, in 1993 as they prepared for Powell’s wedding day.
Stapleford was always in control and organized, but now she could barely handle the simplest task.
When she finally saw a neurologist, Powell said, the family got a dual shock. Not only did the doctor believe her mother had Alzheimer’s, he held the same concern for her father Stuart Stapleford.
“In 18 months, my mother went from trying to teach (her caregiver) to speak French, to not talking or walking, and being confined to a wheelchair,” Powell said. “She died on September 17, 2000.”
Less than two years later, her mother-in-law Janet Powell also died from the disease.
By 2005, her father had begun his downward spiral.
“He faded gradually until he did not know my son or my husband,” Powell said. “He did not know me the last two or three years of his life. In contrast to my mother, his progress was slow and hard. Both of their deaths were a blessing.”
In signing up for the registry, Powell hopes she can avoid the same fate and her son won’t have to watch her deteriorate the way she had to watch her own parents.
“I will do anything I can to participate in the fight against Alzheimer’s,” she said.
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