The Autoimmune COVID-19 Project: Understanding the impact of COVID-19 on IBD patients

As news of COVID-19 emerges and changes by the hour, all of us want to stay informed and take actions to protect ourselves and our families. The CDC warns that older adults and people with underlying medical conditions may be at a higher risk of getting sick from the novel coronavirus. It’s natural for people with IBD to wonder what this means for them. Researchers around the world are working hard to collect data in order to answer patients’ important questions, including in the United States and here at the Crohn’s & Colitis Foundation. 

There is ongoing research looking at how COVID-19 impacts IBD patients through SECURE-IBD, an international pediatric and adult IBD database to monitor and report on outcomes of COVID-19. We recently hosted a video chat with Drs. Mike Kappelman and Erica Brenner from the University of North Carolina discussing what we have learned so far. We plan to continue sharing data on our website in the future.

In addition to supporting SECURE-IBD, the Foundation is launching a new patient research initiative to understand the impacts of COVID-19 on IBD patients. We are sending out an online survey to all participants in three of our research initiatives - IBD Partners, SPARC IBD, and IBD Qorus™ - to collect information about:

  • IBD symptoms, and whether symptoms have changed or worsened during the pandemic 
  • If patients have been tested or diagnosed with COVID-19 
  • How the pandemic has affected patients’ quality of life
  • How the pandemic is impacting access to regular IBD care, including treatment changes and telemedicine

We will make anonymous survey results available for the general IBD patient community, and will also share a map of the United States with areas where IBD patients have reported their cases of COVID-19 in the IBD Partners portal.

In addition, we are collaborating with three other autoimmune disease advocacy groups for patients with arthritis, vasculitis, and multiple sclerosis – Arthritis Power, iConquerMS, and Vasculitis Foundation -  to send out similar surveys to their communities. This novel partnership is called The Autoimmune COVID-19 Project.

Why is it important to participate in COVID-19 research?

Patient participation is crucial to the success of all research initiatives, and especially so during a rapidly evolving public health crisis like COVID-19. The results from our patient surveys may ultimately lead to improved information about how to manage and treat IBD and other autoimmune diseases during an infectious disease pandemic. We hope to be able to answer lots of questions, such as:

  • Do the medications I’m taking affect my chances of getting COVID-19?
  • Are patients with IBD having trouble getting tested for COVID-19?
  • Has the COVID-19 pandemic increased anxiety and depression in patients with IBD?
  • Are patients in different parts of the country having different experiences?

…and many more questions that patients with IBD are commonly asking.

How to take the COVID-19 survey

If you have IBD and are already a participant in the Foundation’s IBD Partners, SPARC IBD, or IBD Qorus programs, you will receive the survey via email from your research coordinator. If you aren’t yet a research participant, it’s easy to get started. All you need to do is join IBD Partners and you’re on your way to having an impact on future IBD research.

Emily Cerciello is Associate Director, Digital Health and Engagement for the Crohn's & Colitis Foundation.