Participating in a Clinical Trial Is Empowering

Participating in clinical trials can be scary, but the sense of empowerment you get from knowing that you are contributing to a cure outweighs any second thoughts.

| 4 min read
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Morgan Barrett
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2017 was a groundbreaking year in CF research, which is great news for all of us living with cystic fibrosis! Behind all this success are hundreds of people with CF and healthy study participants committing their time to clinical trials to push life-improving and life-saving drugs through the pipeline. As of this month there are 63 ongoing clinical trials and 20 that are still open for enrollment at CF care centers across the country.

In 2017, I participated in two clinical trials: one was a Phase 3 study for an anti-inflammatory drug, and the other was a Phase 1 study for a drug that aims to restore CFTR function. I have participated in CF clinical trials before, but with so many new and revolutionary drugs being developed right now, I feel that it's more crucial now than ever before for our CF community to participate in these studies.

I know that being a research subject can be scary. With research comes the unknown: How will this drug affect me? Will there be negative side effects? What if something bad happens? I am already taking so many medications, and I'm in a hospital enough as it is -- why would I want to do more? These are all legitimate questions, and I think about these questions when I'm considering whether to participate in a new study.

I sometimes get upset, thinking, "Why do I have to go through all of this crap just to hopefully live a longer, healthier life? I shouldn't have to put my health more at risk." But then, life isn't fair, and there are many, many people in this world who are less fortunate than I am. So, I do what I am able to do to help myself and others living with this disease, and I am grateful that I'm able to do so.

When you begin the process to participate in a study, the research nurse coordinator goes over the consent packet with you, which outlines every potential risk of the study drug and also any potential side effects that have been noted in previous phases of the study. Sometimes these risks are a bit alarming, but I always remind myself that I am participating in these trials because I want a better future for everyone with CF. Participating in research empowers me because I want to eliminate this cruel disease completely, so that babies born with cystic fibrosis in the future will be able to lead disease-free, healthy lives from day one.

I am deciding to put the greater good ahead of my worries or apprehensions. But to be clear, I have never been negatively affected by participating in a clinical study.

CFF.org/find has a list of all clinical trials that are open to enrollment -- ones that are ongoing and ones that are completed with results. They also list the requirements of each study (like which mutations are required to participate), some information about the study, and which CF centers are participating.

Hopefully, your care team is keeping you up-to-date about clinical trials you may be eligible for, but I know that is not always the case. If you're interested in learning more about research and how you can get involved, a good place to start is to ask your care team. Once team members know you are interested, they will start thinking of you as a potential candidate when they begin enrollment for new studies. Even if your care center doesn't have any studies for you to participate in, they can refer you to other centers that do. And keep in mind, research trials pay pretty well!

Morgan-Barrett-Particpating-In-Clinical-Trial-Hospital-Rectangle

For me, the good outweighs the potential bad. I want more treatment options, and hopefully a cure, as soon as possible, because time is everything. I want to live longer and healthier, and I desperately want that for my brother and sister, who also have CF. For that reason, participating in studies for which I am eligible is 100 percent worth it for me. Until there is a cure.

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Get Involved | Clinical Trials
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Morgan lives with her husband, Kory, and twin babies, Alder and Winslow, in rural northeast Kansas where she enjoys gardening and chicken-keeping. She has many interests and is always entertaining her curiosity, but her mainstays are spending time outside, reading, writing, photography, and cultivating a relationship with plants. She grew up with two younger siblings, Allison and Mason, who also live with CF. You can follow her on Instagram. P.S. Beets, Bears, Battlestar Galactica.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.