Healthy volunteers sought for new Alzheimer’s registry


Alzheimer’s disease affects more than 20,000 people in Rhode Island and 5 million in the United States. It cannot be prevented, cured or slowed. But a new registry at Rhode Island Hospital funded by the National Institutes of Health could change all of that.

The registry, open to volunteers 50 and older, will provide doctors with a database of people who have little or no memory loss but are interested in participating in studies that will seek to find ways to prevent and treat Alzheimer’s disease.

The program is called Prevent AD: The Rhode Island Alzheimer’s Prevention Registry, and falls under the umbrella of the Rhode Island Hospital Alzheimer’s Disease and Memory Center, which was recently launched to study ways to delay the onset of Alzheimer’s. The Butler Hospital Aging and Memory Program and the Memorial Hospital Center for Primary Care and Prevention are working in conjunction with Rhode Island Hospital to launch the registry.

Dr. Brian Ott, the director of the Alzheimer’s Disease and Memory Disorders Center at Rhode Island Hospital, said the point of the registry is to let people know what developments doctors are working on in the areas of prevention and treatment.

“There’s a growing awareness that Alzheimer’s disease…begins in mid-life,” he said. For 10 or 15 years the disease develops in the brain, but there are little to no symptoms. “We’re moving toward early treatment,” he said.

In the past, Dr. Ott said people who were already diagnosed with Alzheimer’s disease were recruited; now, they’re looking for people who have little to no memory loss.

“We want to get the word out to the community,” he said. “We need volunteers for the next three to five years.”

To qualify for the registry, participants must be at least 50 years of age and be willing to take some brief tests of memory to determine eligibility. Those who already have a diagnosis of Alzheimer’s or dementia are excluded from the registry.

Dementia, the predecessor to Alzheimer’s, is the loss of cognitive functioning (thinking, remembering and reasoning) and behavioral abilities. Mild cognitive impairment is the bridge between normal aging and dementia and is becoming a major focus for early intervention studies.

For Dr. Ott, the registry means being able to have volunteers readily available, a step that will speed up the process of learning more about prevention and treatment of the disease.

Some of the studies planned will include clinical trials of medication that prevent and reduce the build-up of plaques, or protein deposits, in the brain. They’ll also study the effects of nasally administered insulin, a treatment that’s being considered since Alzheimer’s is sometimes viewed as “type-3” diabetes of the brain. In addition, doctors plan to do non-pharmaceutical studies that include exercise, dietary changes and overall brain health activities.

Outside of the studies, Dr. Ott is hopeful they will be able to provide registry members with regular newsletters about developments in the field.

Dr. Ott said there is not one single cause for Alzheimer’s but many factors that come into play. For those with early onset (those under 50) Alzheimer’s, Dr. Ott said genetics play a major role in the disease; for those from 50 to 70, genetics and a combination of other factors come into play. For those over 70, age-related factors seem to have the strongest link to causation.

Still, there needs to be more research done to pinpoint the exact causes and how they can be prevented.

Dr. Ott said the registry will not be used for any epidemiological studies – participants’ location and environment will not be examined as a possible cause for the onset of memory loss. However, he said that if someone was interested in doing such a study, they could contact the hospital to acquire database information.

While there are no current methods of prevention, there are a few things people can try to keep their brains and bodies in tip-top shape. Dr. Ott recommends trying a Mediterranean diet rich in omega-3 fatty acids, regular exercise and even simple brain stimulants like word puzzles. Current treatments for Alzheimer’s only help to curb the symptoms of memory loss.

“They don’t treat the underlying disease,” said Dr. Ott, who listed a half dozen medications designed to target memory loss symptoms.

The Prevent AD registry is currently recruiting participants for two studies, both of which were outlined in a press release: The Alzheimer’s Disease Neuroimaging Initiative, which is a multi-year study to determine the best biological markers of early AD using cutting-edge brain imaging techniques and laboratory tests; and The ASPREE Clinical trial, an international study of 19,000 people aged 65 and over to determine the safety and effectiveness of daily aspirin for the prevention of AD.

In addition to updates on these and other studies, registry participants will receive updates and information about upcoming research programs funded by the Alzheimer’s Disease Cooperative Study, a consortium of research centers around the country.

For more information or to sign up for the Prevent AD registry, please contact Michele Astphan, (401) 444-0788 or


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