Among the many decisions you will face as a patient (or caregiver) dealing with Alzheimer's disease (AD) is whether or not to participate in a clinical trial. Clinical trials help scientists understand how AD affects the brain and facilitate the testing of breakthroughs in treatment and prevention. Before joining a clinical trial, patients and their caregivers should understand as much as possible about the specific study and its potential impact.

Making a Difference

A devastating neurological disorder, AD affects more than 30 million people worldwide and results in more than $100 billion in annual patient care costs, said Michael S. Rafii, MD, PhD, director of the Memory Disorders Clinic at the University of California, San Diego (UCSD). Yet treatment and preventive measures approved for the disease are limited. "Current FDA approved drugs for AD do not prevent or reverse the disease, and provide only modest symptomatic benefits," said Dr. Rafii, who is also assistant professor of neurosciences at UCSD and associate medical director of the Alzheimer's Disease Cooperative Study, a national research consortium between the National Institute on Aging and UCSD.

As scientists continue to make advances and explore new approaches for AD, the demand for study participants has increased. By participating in a clinical study, patients have the opportunity to help some of these new treatments, preventive strategies and diagnostic tools become a reality.

Many of the people who participate in clinical trials are motivated by their desire to help others and the hope of eventually curing the disease. "It's about taking a proactive stance versus helplessness and hopelessness-it's about altruism and concern for your children and grandchildren," said Lisa P. Gwyther, MSW, LCSW, education director at the Bryan Alzheimer's Disease Research Center at Duke Medical Center. "It's also about access to the best and brightest experts who are genuinely interested in your condition and your response. And it's a chance to make a difference and be part of an ‘answer' and not just part of ‘the problem,'" added Gwyther, co-author of The Alzheimer's Action Plan (2008).

The reasons for joining an AD study are as unique as the participants themselves. "An individual's decision to enter a clinical trial is a very personal one and there are a variety of reasons for considering taking part in a study," said Dr. Rafii. "Having hope for a future cure, feeling better, and contributing to research and society are some personal reasons participants enter trials. Participants who enter clinical trials also receive access to cutting-edge treatments before they are readily available to the general public."

How Do Trials Work?

Each clinical trial is unique, and its process depends on the research being tested. The research team often includes doctors, nurses, social workers and other health care professionals. Clinical trials are sponsored by health care institutions, government agencies, pharmaceutical companies, individual physicians, and medical device companies. Studies take place in hospitals, universities, doctors' offices and community clinics. As you evaluate a study, be sure to find out the location of the study site and how frequently your attendance will be needed.