My Experience With a Study on the COVID-19 Vaccine in IBD Patients

Let me start by saying I think clinical research is incredible.

I have worked professionally as a clinical research coordinator in a major children's hospital, a clinical research recruitment and retention specialist with a large marketing company, a clinical research content writer for several pharmaceutical companies, a clinical research project manager for a nationally known dental company, and as a social media manager and content creator for a non-profit organization connecting patients to trials.

As someone living with Crohn's disease that is well managed by Remicade, I am here because of the patients that came before me. The brave individuals who participated in the clinical research studies that helped bring Remicade to market.

Deciding whether to participate in IBD research

In the past, I've hesitated to raise my hand for participation in clinical research because of what I mentioned above – my current treatment is working, and I am unable to switch medications at this time. I know many of the patients here can relate.

However, I have been interested in observational studies of all kinds. In fact. during my pregnancy and while I breastfed, I participated in a registry-based study because I was on a biologic.

Getting the COVID vaccine

I recently shared that this winter, I chose to get the COVID-19 vaccine.

I was eligible in January because of my work, and I leaped at the opportunity even though I wasn't originally sure I was going to.

As someone on an immunosuppressed, I have spent the duration of the pandemic in the United States incredibly anxious about how I would fare if I caught the coronavirus. I live with a small child and constantly feared for her safety and my own.

When the ability to get vaccinated arose, my doctors all recommended I get it, and to me, the side effects of the vaccine would always amount to less than the potential damage of fighting the virus.

Is immunosuppression a factor?

About a month after my second dose of the vaccine, I read an article from the New York Times that talked about how the vaccine might not provide adequate or any protection for those with weakened immune systems, specifically including patients that are on Remicade.1

I rushed to email my doctor, asking her what this meant, and if she could order a COVID-19 antibody blood test for me.

Was my relief about being vaccinated going to be short-lived?

COVID vaccine study for IBD patients

My nurse responded, indicating that she couldn't give me a black-and-white answer. The GI community is still recommending that eligible patients get the vaccine while maintaining adequate protections from the virus (masking, social distancing, etc).

She also included information about the "PREVENT-COVID" study, a study for Crohn's and ulcerative colitis patients who have received a COVID-19 vaccine. I signed up immediately for the study.

Participating in the vaccine study

The requirements were minimal – electronic surveys asking about my health history, if I'd contracted COVID-19, if and when I'd received the vaccine, if and how it impacted my IBD, the medications I take for IBD, etc. It also provided the opportunity to participate in periodic bloodwork, including 3-month and 12-month post-vaccine antibody level tests.

The study staff is great – they communicate via email and secure electronic message, and I can get my labs done at a local facility nearby my house.

More importantly, I'm able to contribute to science, research, and the understanding of how IBD (and Remicade) affect response to the COVID-19 vaccine.

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