Clinical trials: Should you participate?

Alzheimer's disease and related dementias are still pretty much mysteries. We do not know what causes them. We do not know how to treat or prevent them. The drugs we have treat some symptoms, but not long-term.

Twenty years ago, long before dementia took over his life, my Dad told me about an extraordinary research project that began in 1986. Catholic nuns at Notre Dame had agreed to be studied and tested by researchers from the University of Kentucky. Upon death, all 678 of the sisters agreed that their brains would be analyzed and stored in a laboratory. All of this was in an effort to provide some Alzheimer's answers.

Lots of other studies are underway, that are not so involved. One that I'm aware of looks at whether Gammagard, a drug already used for immune disorders, can preserve thinking abilities in people with mild to moderate Alzheimer's. I found 18 studies having to do with frontotemporal dementia that are currently recruiting people through the U.S. Institutes of Health's clinicaltrials.gov website--which you can search for studies on other types of dementia.

If you or a loved one qualifies for a clinical trial, should you participate? It's something to discuss with your healthcare provider. The National Cancer Institute gives some guidelines, most of which could apply to any trial for any disease. Some things to ask:

How long will the trial last?

Where is the trial being conducted?

What treatments will be used, and how?

What is the main purpose of the trial?

How will patient safety be monitored?

Are there any risks involved?

What are the possible benefits?

What are the alternative treatments, besides the one being tested in the trial?

Who is sponsoring the trial?

Do I have to pay for any part of the trial?

Will I be compensated?

What happens if I am harmed by the trial?

Can I opt to remain on this treatment, even after termination of the trial?

Many people who choose to participate do so for altruistic reasons. Though they may reap some benefit, the real good comes from the incremental contributions they may make toward solving the mysteries of the brain.