Alzheimer's Research Efforts Need Volunteers

Clinical trials—key to breakthroughs—can encounter long delays in finding enough participants.

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If there is any good news about Alzheimer's, it's that the growing awareness of this unforgiving disease is moving it onto center stage as a major global health concern. With aging populations surging in most countries, the numbers for projected victims of Alzheimer's and other forms of dementia have become alarmingly large. So has the healthcare price tag of caring for them.

Along with a higher profile comes a more ambitious research agenda. Currently, there are roughly 140 clinical Alzheimer's studies and research trials, according to the Alzheimer's Association. These efforts easily could absorb 50,000 participants. And should a drug prove promising in a trial, it could spawn a rush by pharmaceutical companies to launch a large wave of new trials as quickly as possible.

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Finding people to volunteer to participate in trials is proving difficult, and threatens to add years to the time required to find ways to cure or otherwise reduce the impact of Alzheimer's. To help close this time gap, the association launched an effort this summer to recruit research volunteers and match them with a database of Alzheimer's research efforts seeking volunteers.

The program is called TrialMatch and can be accessed on the Internet or by telephone (800-272-3900).

The large trials needed to secure U.S. Food and Drug Administration (FDA) approval of an Alzheimer's drug and treatment regiment may well require 1,000 to 3,000 participants, notes Dr. Bill Thies, the association's chief medical and scientific officer. It can take 18 months to fill such a trial, he says. And if further trials are then needed before the drug is sold to consumers, the research horizon can grow to five or six years.

"The real-world constraints are significant," Thies says. Ideally, he explains, many researchers would like to find a person who has Alzheimer's, who may be 75 years old, and suffers from no other medical problems. That rules out other diseases as a complicating factor in determining the effectiveness of an Alzheimer's treatment. But it also represents a very small percentage of people. "There aren't too many people who get to 75 without experiencing other significant health problems," Thies says.

Also, people already suffering from Alzheimer's may have little awareness of such research, and family caregivers may not know much, either. A family overwhelmed by the stresses of caring for someone with Alzheimer's may not be inclined to add yet another burden. Realistically, any resulting medical progress would come too late to help their loved one.

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Then there's the reality of the trials themselves. "It is an imposition on people's lives to be involved in a trial," Thies says. "Many of the drug trials now will include some imaging or biomarker components" that require body scanning. "You're asking somebody to sit in a scanner that bangs and cranks for half an hour ... It takes a strong sense of volunteerism" to participate in such a trial.

Still, the association says it is heartened by early response to TrialMatch. More than 5,000 people have completed volunteer profiles and nearly 1,000 have been referred on to clinical trials. The association does not know how many people have actually been enrolled through its efforts because it does not collect that information.

"Educating people of the need for volunteers is a big part of what we are trying to do," Thies says, "and we are starting to see the downstream numbers grow for recruiting and enrollment."

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"The trial business today is highly based on having informed consumer consent," he adds. "We recommend that people be as highly informed as possible." The association provides extensive background information at the TrialMatch website.