Halfway through Lisa Genova's excellent novel Still Alice, about a 50 year-old Harvard professor diagnosed with early-onset Alzheimer's disease in the prime of her life, I was struck by the scene where Alice's neurologist is recommending that she participate in a clinical drug trial. When she realizes she might get the placebo and not the active drug, she "suspected that amyloid-beta didn't give a shit about placebo effects or the power of wishful thinking."
Clinical trials are the primary way that researchers find out if a promising treatment is safe and effective for patients. They take place at private research facilities, memory clinics, teaching hospitals, specialized AD research centers, and doctors' offices. An excellent discussion of dementia clinical trials in question and answer format may be found at the National Institute on Aging website.
Certainly the need for trial participants is staggering: according to the National Institute on Aging, today "at least 50,000 volunteers both with and without Alzheimer's are urgently needed to participate in more than 175 actively enrolling Alzheimer's disease clinical trials and studies in the US. To reach that goal, researchers will have to screen at least half a million potential volunteers."
In my experience participation in a dementia clinical trial is best viewed by patients and caregivers as a terrific opportunity to contribute to knowledge that will help future patients as opposed to just themselves. It is a very altruistic endeavor that is essential if meaningful progress is to be made in the field. The other significant benefit is the regular contact with the study team. Team members may become an invaluable source of support, advice and education.
In a revealing page one article in the August 3, 2009 edition of the New York Times, it was noted that there are more than 6,500 cancer clinical trials seeking adult patients , and that many will be abandoned along the way. In addition, "more than one trial in five sponsored by the National Cancer Institute failed to enroll a single subject." Stated bluntly in the article, "Most patients are not interested in clinical trials. Some do not want the extra office visits and tests a trial entails and do not want their treatment determined by the flip of a coin. Others fear getting a placebo...Others find the whole idea too overwhelming when they are trying to save their lives."
My advice is to ask the tough questions that may not be spelled out: what are my options when the trial ends, what if the drug really helped but it's not yet available on the market, what if side effects or other reasons lead me to want to drop out of the study, and are my regular doctors restricted from changing my medications while I'm enrolled in the study?