My Story: A Clinical Trial

Last updated September 16, 2024

This is my story about navigating through the process of participating in clinical medical research study.

I'm a 32 year old male living in Sacramento, California. You can call me Jeff, and this is my story.

Participating in a clinical medical research trial was one experience in my life that unfolded over a few months. When I began this journey, I decided that I wanted to earn some extra money and also help other people with my condition. I was excited about participating and anticipated this very much. In the beginning of the trial there would be medical visits and other times when I would see doctors etc. It all started with a personal health challenge that had brought me down the path of seeking a new, innovative treatment. This urge brought me to the idea of participating in clinical research.

This journey began with talking to my doctor at a routine physical. I had been managing a long-term chronic condition that had a treatment, but the effectiveness was starting to wane and new symptoms were starting to happen to me. My doctor informed me of a clinical trial that was seeking people like me with my specific condition. The idea was exciting but also daunting. I was about to agree to participate in experimental medicine. After thinking about it, I was a little bit nervous, but I decided to take a deeper look at this opportunity because I really needed to find an alternative treatment, and I also desired to make a contribution to the advancement of medical science.

After spending a few weeks researching clinical trials and using online databases, I spoke with some patient advocacy groups and attended informational webinars. I began looking for a trial that was both matched to my condition but also was being performed by a reputable institution. I wanted to join a study that had clear goals and a safety protocol and regimen that I could manage with my busy lifestyle. When I did finally find a trial that seemed promising, I contacted the people who were coordinating the trial and got all the details that I needed.

The screening phase was time consuming and exhaustive but I think it was worth it. I underwent a series of tests and assessments that felt like I was putting my entire medical life and my body as well as my mental health under a magnifying glass. There were hours spent filling out detailed health forms and questionnaires. I had to recount the medical history of my entire life, and I had to discuss my current health conditions with a group which was actually a panel of special doctors and moderators. After making it through the initial screening, I had to endure physical examinations, blood tests, MRI scans, and even a psych evaluation in order to ensure that I was a suitable candidate for the clinical trial. This process was also about confirming my eligibility and by passing all of the tests. It helped to ensure that my safety was paramount when I was to participate in the trial.

There was a session where I met with some people from the panel about informed consent. I was given a large document. That was very thick with all the pages which outlined the study's objectives, the methodologies in place, as well as the potential risks and benefits that were assigned to my case. It also detailed my rights as a participant. The trial coordinator and a doctor went through each of the sections with me and they were patient when I had questions and they tried to answer them to their best ability. It made me feel more comfortable. I could feel the weight of the decision knowing that there was a potential for negative health effects that could be life-changing. I was hoping for life-changing effects in a good way but I knew that there were also uncertainties and risks. I ended up signing the form and it felt like a commitment and not just to the trial but to give my health to the hands of the people who were running the trial.

After signing away my consent, I moved to what was called the baseline assessments which were designed to establish my starting health metrics. I was given more blood tests, more special imaging and more personal interviews. They measured everything from my blood chemistry, the functioning of my organs and other physical capabilities of mine, they created a comprehensive snapshot of my health before the trial actually began. This phase of the trial felt like I was about to embark on a serious mission and taking the proper steps such as building the baseline were an important foundation.

After that, I was accepted into the trial and my baseline was established. There was a period where they would randomize the groups and I was placed into one of the two groups which I would not know about if I was selected for the treatment group until much later. I was either going to receive a new drug that could help me or I was to receive a placebo which would help them to understand their medicine better. This process was blind which meant neither I nor my immediate medical team knew which group I was in. Although there were protocols in place for emergency situations where they could find out this information, it was not a routine part of the trial. The concept of being part of a blind study was intriguing, but it also added a layer of stress as I had to manage my expectations and how I responded without knowing if I was actually receiving a novel treatment. This was one of the hardest parts of the study for me because I was hopeful that I was in the study group.

After the randomization and being selected into one of the groups, which I still did not know about, the treatment phase was about to begin. The treatment became a significant part of my routine in my life. Every week I would visit the research center where I would undergo checkups and receive medication or in some people's case placebo, and I would give them some blood samples and allow more tests. The consistent nature of these visits created a new structure in my life that I had to adapt to. I was a regular patient visiting doctors and having checkups and I was also participating in scientific discovery. Each visit with the doctors was an opportunity to have my health checked, discuss the way I was feeling, including any side effects and allowing for them to adjust my treatment plan if it became necessary. I kept notes and kept a detailed diary as they instructed me to, which helped me to remember everything about my experience including physical changes and psychological states and mood shifts. This journaling became crucial for monitoring my relationship with the treatment.

Side effects are common occurrences in clinical studies and as I understand, even placebo groups experience side effects and this is why the placebo effect has so much notoriety. My side effects were mostly mild, including some feelings of nausea, fatigue, and an occasional headache. These effects were carefully monitored by myself and the doctors, and adjustments were made to manage them. There were some times when I felt discouraged and scared wondering if the side effects were not worth it, but the support that I received from the trial team was very helpful and they provided medical and emotional support to help me get through these challenging feelings.

The trial was long, and it actually took longer than I imagined it would. So I became patient with the weekly doctor visits and keeping track of my health. I was encouraged by the idea that I could be receiving a drug that would help me with my condition. There were no quick answers or immediate results and we occasionally heard about data that was hopeful, but I was never given information about whether I was in the active treatment group or not until the study came to completion. This period of uncertainty was the most difficult thing about the trial, but it also taught me about staying mentally, strong and feeling grateful that we have these sorts of scientists who are investigating in such a controlled and slow paced manner.

In the final few weeks of the trial, as it was coming to an end and I was to go in for a series of final assessments. This was the moment of truth where I could learn if there was any improvement in my condition. The tests were incredibly thorough which were the same tests as the baseline assessments but now looking for changes in my condition. I had a feeling of excitement but it was punctuated with a high-level of anxiety as I waited to see if the intervention that I was given had made a difference in my condition.

After the trial was over, they gave me what they call the debriefing. I was to learn whether I had been on the active drug or a placebo pill. Regardless of my personal outcome, there was a feeling that I had accomplished something. I had been part of something larger than just my own personal health and I contributed partially at least to the body of knowledge of scientific discovery that could help future patients with my condition. If the treatment had worked for me, there was a possibility of continuing on it, which was the most hopeful thing about the whole experience.

When the trial was over, I reflected back on my participation in the trial. It was an enlightening experience about how medicine is studied in a developed country. It was not just about my health but it was also about the health of all of humanity. It was an educational experience and offered insights into how medical research is conducted and how the scientific method is used. I was able to meet others on similar paths and we formed bonds that still exist to this day. I learned about the resiliency of our public health care and my story became part of a larger narrative on advanced medicine.

I am happy to report that I received the treatment and that it made a significant improvement in my life. And the fact that it worked for me meant that the continuation of the study would be allowed, and I was to keep taking this treatment which has had a profound positive effect on my life.

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