Like literally millions who have lost a loved one to Alzheimer’s disease, my family was devastated when my grandfather, Stanley Friedman, was taken from us. The heartbreak seemed to happen in slow motion. A kindly man whose smile could light up a room, he was a retired engineer, avid golfer, and sports fan. First, he started forgetting things. Then, he had difficulty navigating a website to order my wedding gift, the decorative ketubah marriage certificate for a Jewish ceremony. Later, he had to stop driving and give up his beloved job as a part-time usher at the Arizona Diamondback baseball games. After that, he was unable to recognize my children, and finally, he forgot my name as well.
This cruel disease inevitably robs its victims of their ability to care for themselves, and takes away their dignity, leaving families feeling shattered and utterly powerless. But there is something in the human spirit that can almost always find hope. For me, it has been through my career as an Alzheimer’s researcher, devoting myself to a daunting yet nonetheless promising pursuit: taking Alzheimer’s research in a new direction by figuring out how to prevent the disease before any symptoms arise.
There is something in the human spirit that can almost always find hope. For me, it has been through my career as an Alzheimer’s researcher, devoting myself to a daunting yet nonetheless promising pursuit: taking Alzheimer’s research in a new direction by figuring out how to prevent the disease before any symptoms arise.
I want to share my hopes with the countless daughters and sons, grandchildren, friends, and extended family who have become discouraged enough about Alzheimer’s to believe there is nothing they can do. My organization, the Banner Alzheimer’s Institute in Phoenix, along with others, is leading groundbreaking clinical trials to postpone, slow, or even prevent the progression of the cognitive symptoms of Alzheimer’s in people who are at high risk based on their age, biomarkers and genetics. It is known as the Alzheimer’s Prevention Initiative—and you and your family could play a vital role.
In a recent Harris Poll we commissioned of more than 1,000 U.S. adults, we found that a majority of adults are worried that they might develop Alzheimer’s and are optimistic that a cure can be found during their lifetime. An overwhelming majority believe that medical research holds the key to a cure, and 77 percent are willing to participate in such research. Yet two-thirds (67 percent) have no idea how they might get involved in a medical research study.
In the U.S. there are more than 200 clinical studies recruiting volunteers to take part in critical Alzheimer’s research. One of the biggest misconceptions about clinical trials is that they need volunteers who are already ill. On the contrary, much of the Alzheimer’s research on the horizon needs substantial numbers of volunteers without symptoms because the scientific focus is on preventing the disease before symptoms appear.
Unfortunately, Alzheimer’s research has a problem finding volunteers: An estimated 80 percent of research studies don’t complete enrollment on time because they can’t recruit enough people. And, because many trials require specific criteria for participation, scientists must consider tens of thousands potential participants to fill a trial; evaluating perhaps 30,000 people to fill a 2,000-person trial.
Much of the Alzheimer’s research on the horizon needs substantial numbers of volunteers without symptoms because the scientific focus is on preventing the disease before symptoms appear.
You can help change that. To help accelerate enrollment, I am leading two recruitment registries to connect people with available research opportunities in their communities—the Alzheimer’s Prevention Registry and GeneMatch.
The Alzheimer’s Prevention Registry, which launched in 2012, connects leading researchers with people who are interested in taking part in Alzheimer’s studies. These studies range from online questionnaires and caregiver surveys to observational studies and clinical trials for people with and without memory impairment. The Registry has grown into an engaged online community of more than 330,000 volunteers, ages 18 and up — but we still need more volunteers.
Three years ago, we created GeneMatch, a confidential research program accelerating research recruitment by matching healthy volunteers—U.S. residents, ages 55 to 75—with ongoing Alzheimer’s prevention studies, based in part on their genetic profile. We’ve signed up more than 85,000 people, but that, too, is not enough.
With GeneMatch, volunteers submit a DNA sample via a cheek swab kit. This helps us accelerate enrollment by identifying volunteers who meet each trial’s criteria. After completing the swab, volunteers may be matched with research studies based in part on their results. Enrolling in GeneMatch doesn’t mean you will automatically learn your genetic results. And we take extreme care that no participant’s genetic results are inadvertently disclosed.
Using GeneMatch, we are enrolling people ages 60 to 75 with no memory or thinking problems into a research effort known as the Generation Program, which consists of two separate studies. For Generation Study 1, we are examining whether two investigational anti-amyloid compounds can prevent or delay the emergence of symptoms of Alzheimer’s among higher-risk healthy older adults who have two copies of the ApoE4 gene, which we believe is linked to Alzheimer’s. For Generation Study 2, we are examining an investigational anti-amyloid compound in people at high risk of developing symptoms of Alzheimer’s because of their age and because they carry either one or two copies of ApoE4. The course of these studies is expected to last up to several years.
When my grandfather took ill, my mother, Ivy Segal, who is 67, was heartbroken and also fearful about the future. Instead of avoiding her fear, though, she embraced it head-on and decided to do something she knew could make a real difference: She joined GeneMatch and got her cheek swabbed.
Dr. Jessica Langbaum is director of the Alzheimer’s Prevention Registry and its GeneMatch program. In addition, she is responsible for the scientific and operational oversight of the Alzheimer’s Prevention Initiative (API) clinical trials program which currently includes the API autosomal dominant Alzheimer’s disease (ADAD) trial in Colombia and the API Generation Program. Dr. Langbaum serves on several national and international advisory boards. She received her bachelor’s degree in neuroscience and psychology with high honors from Oberlin College and her Ph.D. in psychiatric epidemiology from the Johns Hopkins University Bloomberg School of Public Health.
If you would like to get more information about joining a clinical trial, you can sign up for the Alzheimer’s Prevention Registry or register for genetic testing that qualifies people for research through the GeneMatch and Generation programs. The author is affiliated with those programs and the information published on this page reflects her professional opinion.