Summary: Alzheimer’s researchers say it’s difficult to recruit participants for clinical trials. Whether or not you have memory problems, joining the Alzheimer’s Research Registry is one way you can help move research forward.
In a post about Alzheimer’s research at Sun Health Research Institute, I wrote about the difficulties researchers face in recruiting participants for clinical trials. This can delay a study by months or even years.
To address this problem, the Arizona Alzheimer’s Consortium, a group of Arizona research institutions, has set up a clinical trial registry to recruit and screen participants for current and future studies. The Alzheimer’s Research Registry was launched in March of this year to screen people with and without memory problems for studies and trials including:
- treatment studies for people with probable Alzheimer’s
- non-treatment studies for people with Alzheimer’s
- treatment studies for people with mild cognitive impairment
- planned (but not yet available) prevention studies for cognitively normal people
- non-treatment studies for cognitively normal people.
Why Screen Potential Participants Before A Study Starts?
“People sometimes ask why the Arizona Alzheimer’s Consortium is evaluating potential study participants for studies that may not exist yet,” says Dr. Pierre Tariot, Associate Director of the Banner Alzheimer’s Institute. He and Dr. Marwan Sabbagh of Sun Health Research Institute co-founded the registry. “The reason is that the field anticipates a wave of both treatment and prevention studies in the coming months and years. There are likely to be literally hundreds of studies. From prior experience with a large prevention trial, as well as treatment studies, Dr. Sabbagh and I learned that waiting until a study is completely ready to start can result in considerable lost time. We and our Arizona Alzheimer’s Consortium colleagues chose to anticipate this surfeit of trials, so that as soon as they become available we can immediately refer significant numbers of prospective participants. We want to be able to turn the key and go, without losing precious months.”
People in the registry are already participating in trials. “About 150 have been referred to current studies,” Dr. Tariot says, “not all of which are clinical trials. These include biomarkers studies, imaging studies, and several treatment studies for people with probable Alzheimer’s. The last category has included the ADCS DHA trial, two rosiglitazone trials, a cognitive enhancer trial, and an immunotherapy trial.” Since the registry’s launch, approximately 1100 people have contacted the registry. About 500 have been screened, and another 50 await screening.
Joining the Registry
You must be over 50 to be in the registry. Joining is free, and can be done by mail and telephone [call 602-239-6500 or email firstname.lastname@example.org to get the necessary forms]. After the initial screening, depending on the study involved, further medical evaluation may be needed to clarify your cognitive status or diagnosis.
People who live outside Arizona can join the registry, says Dr. Tariot, but they must be able to travel to the state. “Frequency of travel depends greatly upon the particular study,” he says, “ranging from as little as a one or two day visit for the simplest non-treatment study to roughly twice a month in the most intensive studies. Studies involving treatment often average about one visit every month or two. Also bear in mind that studies with higher potential for risk, such as immunotherapy, might not be a good choice for someone living at a great distance.”
If you want to see Alzheimer’s research move forward, joining the Alzheimer’s Research Registry is one way to help.