Did you ever wonder what it would be like to participate in a clinical study for Alzheimer’s disease? Maybe you find the aging process interesting and would like to learn more about how the brain changes as you age, or you have a relative who’s been diagnosed with this monster called Alzheimer’s… or you just have extra time on your hands and want to help find a cure. If you have ever thought about volunteering for a clinical study for any reason or if you are just a little curious about the process, read on because I am going to share details of my day spent as a clinical study participant.
I signed up for a clinical trial because my father is an Alzheimer’s patient. Over the years, I watched helplessly as he deteriorated both physically and mentally. Upon learning about the many clinical trials being conducted throughout the United States, I decided that it was something concrete that I could do to help alleviate this horrible illness. Note that I have no signs of Alzheimer’s disease except for the occasional word retrieval problem which—if I am correct—seems to be a normal phenomenon of the aging process. I participated in this clinical study strictly as a “healthy volunteer”.
My day started early—at 5:30am—when I stumbled out of bed, threw on some clothes and began my two hour commute to Indiana University where I met Eileen, a clinical research specialist. I was immediately taken to the hospital lab where ten vials of blood were taken. The blood is used for genetic and biomarker research tests including ApoE gene type and a ribonucleic acid (RNA) study which measures the activity of genes in the body. So far, I felt good about my participation in the study. The hospital staff even brought me a full breakfast at the conclusion of my “fasting” blood work.
Next I was given a thorough eye exam which included all the normal testing plus several tests measuring peripheral vision. These tests required looking into a cone-like contraption in a darkened room while holding my head completely still for several minutes as I pushed a button each time a light appeared. This peripheral vision eye test was new to me and even though my neck and shoulders hurt slightly, I found the procedure to be interesting.
For the next three hours I sat across from Eileen in her office as she tested my short term memory. These tests started with a short list of unrelated items that Eileen verbalized and I repeated. This process continued several times with Eileen adding a new word to the list each time until I could no longer remember all of the words. An example of a word list might look like this: apple, elephant, chair, toothbrush, table, banana, doctor, dog, melon, bed. Once I failed to remember a significant number of the words, Eileen would then ask me to name only the animals listed or only the items of furniture listed. This test was followed by picture cards which each had a common, everyday item shown and I had to name the item. Next came lists of numbers….Eileen started with two numbers that I repeated back to her, then for each repetition, she would add another number. I have no idea what is expected or “normal”, but found that I could remember up to seven numbers. After seven, all of the numbers became a jumbled mess in my mind. I finished up this cognitive testing by listening to short stories on a computer and repeating back all the details of the story that I could remember. None of these tests were difficult, but because I wanted to do well—I certainly didn’t want to exhibit signs of Alzheimer’s—they were stressful.
After a short lunch break, it was time to complete the last test of the day…a magnetic Resonance Imaging or MRI for short. The purpose of this scan was to obtain images of my brain’s anatomy or appearance and to look at the brain in action. Once I was settled into the correct lying down position, sensors were placed on my arms and chest to measure heart rate, breathing, blood oxygen level and sweat gland activity. Earplugs were placed in my ears for protection against the loud tapping noise of the scanner and I was given goggles and headphones in order to see and hear the memory tasks in the scanner. Pads were placed under my shoulders and a warm blanket provided a cocoon of sorts for comfort. Lastly a box with two buttons was placed into my right hand and I was instructed to lie perfectly still for the duration of the MRI. For the next ninety minutes pictures appeared in the goggles and for each set of two pictures, I pushed the top button on the box if the pictures shown were related to each other or the bottom button if they were not related to each other. I was slightly uncomfortable remaining in the same position for ninety minutes, but my biggest challenge during this MRI was staying awake. An early start to the day…numerous tests…a warm blanket…and I just wanted to sleep.
My clinical study day was over at the conclusion of this MRI. I was exhausted—both mentally and physically, but I also felt good about completing the day. This feeling reminded me of my school days…at the end of finals, I was drained, but also felt great because it was over and I had completed something worthwhile.
According to the Alzheimer’s Association, there are over one hundred and thirty Alzheimer’s clinical trials currently being conducted at five hundred trial sites across the United States. And the greatest obstacle to developing the next generation of Alzheimer’s treatments, other than funding, is the recruiting and retaining of clinical trial participants. Yes, it takes some effort and a few hours of your time, but maybe together we can obliterate this horrible monster that ravages the mind and destroys the self-worth of each victim. If this article has peaked your interest, more information about Alzheimer’s disease and the clinical trials can be found at the Alzheimer’s Association online via www.alz.org.