The toll of Alzheimer’s disease is reaching epidemic proportions. Someone is diagnosed with Alzheimer’s in the United States every 69 seconds — a somber reminder that we must do more if we are to find an effective treatment for this devastating, debilitating condition. More than 5.2 million Americans are currently diagnosed with Alzheimer’s, and without true scientific breakthroughs, that number could nearly triple to 13.8 million by 2050. Beyond the human suffering, such a projection carries an extraordinary fiscal threat: Virtually every healthcare dollar that Medicare and Medicaid spends by then could be related to Alzheimer’s, without anything to spare for other serious illnesses.
The numbers alone make current research into Alzheimer’s all the more urgent. In fact, many researchers believe we are at a critical juncture. Sophisticated imaging studies are showing with increasing clarity that changes in the brain happen far earlier than we thought, years and even decades before memory and thinking problems begin. This “silent” period may be the key time in which to act, through drugs or other therapies to slow or stop the damage to the brain, if not prevent the disease altogether.
And that is the core strategy in the Alzheimer’s Prevention Initiative (API), an international collaboration of scientists who are starting clinical trials in cognitively healthy individuals whose genetic history puts them at highest risk. These trials will test interventions at the earliest pre-symptomatic stage of the disease. But they are just the beginning.
In this country, important alliances are forming among some of the most preeminent research organizations. Spurred by the National Plan to Address Alzheimer’s Disease, government leaders are making the regulatory and policy changes necessary to advance this work. Private-public partnerships are being established to encourage innovative ways of leveraging resources and data sharing to a degree that previously would have been unthinkable.
Yet amid all the progress, recruitment for Alzheimer’s clinical trials remains a very difficult challenge. Any scientific endeavor involving human subjects, regardless of its size or potential, is dependent on enlisting individuals willing to take part in the research process. Too few are volunteering. Data from the National Institutes of Health indicate that 85 percent of drug trials face delays because attracting and retaining participants has become so tough.
Part of the problem is a misconception that these trials mostly focus on people who are ill and have no other options. With many of the Alzheimer’s studies on the horizon, the opposite is true: Individuals without symptoms are the target.
The solution may be found through an online community launched last year specifically to help overcome this recruitment barrier. The Alzheimer’s Prevention Registry, at http://www.endALZnow.org, offers individuals a chance to keep abreast of the latest scientific news and findings and connects members interested in enrolling in clinical studies with investigators in their community who are doing prevention research. The Registry’s goal is to sign up 250,000 healthy adults, with or without a family history of Alzheimer’s, who want to help stop the disease.
Every person who joins the Registry brings us one step closer to that breakthrough discovery that may transform the treatment of Alzheimer’s — and then allow us to truly defeat it. What a far different future we could then look forward to in 2050.