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Signing Up to Help Fight Alzheimer’s – NYTimes.com

By Paula Span
The New York Times
The New Old Age

I just signed up online for the new Alzheimer’s Prevention Registry. It took about three minutes: I entered my name, birth date, gender, ethnicity, e-mail address and answered a few questions about whether I had received a diagnosis of mild cognitive impairment or dementia or had a family history. (I will resist the urge to crack nervous jokes about car keys or whether I will remember the username and password I just created.)

Since May, 6,950 people have enlisted, even with minimal publicity about the registry. But the Banner Alzheimer’s Institute, the nonprofit research organization that operates the registry, is cranking up its campaign and hopes to enroll 100,000 volunteers by the end of June, according to Jessica Langbaum, a psychiatric epidemiologist and principal scientist there. Eventually, the goal is 250,000 participants.

Dr. Langbaum hopes the registry will provide information, raise public awareness, and help debunk nonsense surrounding treatment options (sorry, there is no evidence that coconut oil helps) — all worthy objectives. But to me the primary reason to register was to help accelerate the pace of Alzheimer’s research.

Because it is becoming clear that the disease can start devastating the brain years before symptoms appear, scientists increasingly want to focus on prevention, testing medications, supplements and lifestyle changes in apparently healthy adults.

They will need a lot of us, and we are not so simple to recruit. Major clinical trials generally require 2,000 or more participants, Dr. Langbaum pointed out. “It can take 18 months or two years to get enrollment,” she said. “That’s way too long.”

Banner’s model was a registry for breast cancer research, the Dr. Susan Love Research Foundation’s Army of Women, which now includes more than 370,000 names.

“For some very hard to fill research studies, studies that were taking a year or two to recruit for, they’ve cut the time down to months,” Dr. Langbaum said, with a touch of envy.

The Alzheimer’s registry will similarly invite participants to join clinical trials across the country, though of course we are under no obligation to agree. Nor will everyone on the list fit the parameters for particular studies.

The Alzheimer’s Association launched its own registry in 2010. Called TrialMatch, it has enlisted almost 40,000 volunteers and has referred more than 8,000 people to studies underway at U.C.L.A., the University of Pittsburgh, Indiana University, Brigham and Women’s Hospital in Boston and dozens of other sites. Big pharmaceutical companies including Pfizer, Eli Lilly and AstraZeneca are using it, too.

TrialMatch aims more squarely at people who already have dementia symptoms, though it also accepts caregivers and others who don’t.

In either case, “the registry would be a game changer for our field,” Murali Doraiswamy, a psychiatrist and Alzheimer’s researcher at Duke University, wrote in an e-mail. Study staff members often need to screen three or four people for every one that enrolls in a trial, a lengthy and expensive process.

“A registry could cut the time to complete studies by half, which means we get results faster and possibly a new drug to the market sooner,” Dr. Doraiswamy said.

So far, the track record to date for both treatment and prevention research is fairly dismal. In the past two years, several big Alzheimer’s drug investigations came up empty. Maybe, as Dr. Langbaum said, the intervention has to start much earlier.

Or maybe, as other scientists have argued, research has stumbled because we still do not know what causes the disease. Nor do we know of anything, aside from more years of education and regular physical exercise, that significantly lowers a person’s risk.

But for science to advance, it needs research subjects, and perhaps the Alzheimer’s Prevention Registry can at least help round some up. It has 6,951 names now.

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”

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~ by Butch on November 24, 2012.

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