Tell Me More About This Clinical Trial Stuff

I am often asked about what it is like to be in a clinical trial. Why did I choose to participate and what advice would I provide to other patients who are considering participating.

First things first. I have always been a learning enthusiast but I really didn't get involved in trials/studies until after a few disastrous health care incidents. I had originally seen a specialist who did not share the same goals that I did. I was told to be patient that my symptoms would ease. They didn't and I ended becoming significantly ill. My doctor wasn't receptive to other investigations or treatment ideas. I finally had to cut the cord with that doctor. 

The good thing that came out of that experience is that I did a lot of research about the diagnostics that I wanted to be performed, what treatments were in development, what doctors I wanted to see and what their research interest are. During this progress, I discovered that many centers have active studies that asthmatic patients can be involved in.

Looking to clinical trials as treatment

After I broke up with my old fossil of a specialist. I was referred to a super-specialist who was doing a lot of work investigating monoclonal antibodies in particular. My referring physician had come to the end of his available options and had suggested referring me to a super-specialist who had an active trial exploring the use of an anti-IL5 in severe asthma patients. I was hoping that I could instantly get into his trial. It wasn't quite that easy. This super-specialist wanted to rule out any masqueraders, investigate all the pathology and try some treatment adjustments first.

What I did not realize at the time was that trials do not stay open forever to enrollment. There are either a maximum number of participants or time frame criteria in which the study will be available for enrollment. In my initial circumstance, I came at a time in which the study was filling up globally but I had not yet been deemed eligible by the Principal Investigator. It was a learning lesson, as it took two years before I could try again for a phrase three study for that drug. There would not have been a guarantee that I would have received the active drug, however, not being able to participate was heartbreaking at the time.

What to expect going into a clinical trial

If you are considering being involved in a study, you will need to keep realistic expectations in the back of your mind. You may see an ad at your asthma clinic, online, or hear about the study from your physician or friend. I would recommend that you do as much research as possible on the drug, treatment, or observational study as possible. Study coordinators do an amazing job of explaining the study, you will also need to provide consent to move forward to the screening appointment. Providing your consent is the first step.

Then the coordinator goes through the study and its expectations with you. You will have an opportunity to ask a ton of questions. You should determine if this is something that you would really like to do. Unfortunately, there are no guarantees with a study. You can get the placebo, you may get worse instead of better, you may have to make a lot of trips to the study center and it could require a lot of time off of work. Do the study requirements work with the time that you can commit?

Benefits of participating

The good news is there are some greats benefits. You are helping researchers move towards better treatment and understanding of asthma. You may receive an investigational drug that benefits you, you may have a great learning experience.

I have been very fortunate to have had positive results from the trials that I have participated in. I will admit that dealing with a placebo isn't always the most fun, however, taking less prednisone, having an improved quality of life, and developing a better understanding of what drives my asthma has been invaluable experiences.

If you are interested in learning about research opportunities, great resources are asthma centers that are connected with universities, clinical trials.gov which is part of the NIH (National Institute of Health Services in the US) or speaking directly with your doctor or local patient group about opportunities.