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Enrollment in Alzheimer's clinical trials remains low despite willingness to get involved

by Christina Hwang, Contributing Reporter | July 25, 2016
Alzheimers/Neurology Business Affairs Population Health Risk Management
What can be done to improve participation?
If a majority of Americans would consider participating in an Alzheimer’s clinical trial, why are enrollment numbers so low? When 2,056 adults were asked by the Global Alzheimer’s Platform (GAP) Foundation if they would be willing to participate in a trial, 59 percent replied positively — and yet less than 10 percent actually participate.

“Data shows us that the willingness to participate in clinical trials is there, so our next step is to bridge the gap between willingness and actual participation,” said John Dwyer, president of the GAP Foundation, in a statement. The gap may be owing in part to inadequate access to information and tools for trial participation.

Of the 59 percent who are willing to participate, 20 percent say they are definitely willing, and 39 percent say they would be willing to consider it. So the question is: how do clinical trials elicit that population to join their research?

“The way we do that, is to make it as simple as possible for people to learn about what clinical trials they qualify for and how to sign up,” said Dwyer.

The GAP foundation recommends registering at The Brain Health Registry (BHR), a free, online platform that lists potential trial candidates by gathering data from volunteers who registered and completed questionnaires and cognitive tests using its website.

The survey also found that 23 percent of participants feared developing Alzheimer’s more than other medical conditions (compared to 18 percent who most feared having a heart attack). Additionally, 17 percent of the younger respondents (ages 18 to 34) were under the misconception that there is already a cure for Alzheimer's.

Currently, 17 Alzheimer’s disease treatments are in phase 3 clinical trials, which assess efficacy, effectiveness and safety of a certain drug on patients. If the drugs are successful and approved by the FDA, they could enter the U.S. market in the next five years.

“We’re closer than ever to finding a treatment for Alzheimer’s, but we need an engaged army of citizen scientists to push these drugs over the line,” said George Vrandenburg, co-founder of GAP Foundation and USAgainstAlzheimer’s, in a statement. “Clinical trials are the ticket to making a cure happen. The first person cured of Alzheimer’s will be in an Alzheimer’s clinical trial."

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