For most people heavily involved in writing about Alzheimer’s, or working with people with the disease, there is an increased awareness of the fact that they could one day also be diagnosed with Alzheimer’s disease. I am no different.
I’ve contemplated how I’d feel about a trying a drug yet to gain FDA approval, in a drug trial, if I knew that there were no other options. I can’t honestly put myself into that mindset, since I don’t (yet) have the diagnosis. However, I am fairly sure I’d be researching drug trials, or would ask a family member to do so.
For people interested in drug trials, the Alzheimer’s Association has added a valuable tool to their Web site called TrialMatch. Considering the number of questions I receive from people asking how to become involved in drug trials, I expect this site to explode with inquiries.
The overview on TrialMatch states that “…More than 100 research studies pertaining to Alzheimer’s disease and related dementias are underway and recruiting volunteers. Alzheimer’s Association TrialMatch lets you search these trials…”
The site truthfully is easy to navigate and straight forward with the instructions about how to get on a drug trial, or for researchers, how to add a drug trial. I emphasize this, because many of us who search Web sites find their “simple” isn’t the same as our “simple.” The Alzheimer’s Association has done a superb job of designing the site to be user friendly, which is helpful for many elders who are fairly new to the Internet. For those who prefer the telephone, call the Alzheimer’s Association toll-free number at (800) 272-3900, 7 a.m. to 7 p.m. CT, Monday through Friday, to get more information or sign up for a trial.
These drug trails are thoroughly vetted. According to the site, “In order to be included in Alzheimer’s Association TrialMatch, trial sites must submit proof of their approval by an institutional review board (IRB).” Most of us would want some proof of a safety record before we get involved.
However, drug trails are called trials for a reason. They are part of the journey a new medication must take in order to become FDA approved. Therefore, there are always risks. My personal feeling is that even with nearly all FDA approved drugs, there are still risks and side effects. If I had a loved one diagnosed with Alzheimer’s disease, I’d want to know what is in the pipeline now, so we could at least get information and make an informed decision as to whether we would like to join a trial.
If you consider this route, you should have your loved one’s own doctor on board with your decision. Meanwhile, congratulations to the Alzheimer’s Association for their ongoing work to help people with this disease.Posted in Alzheimer’s, Dementia, Studies | No Comments »