Q&A: New registry aims to report COVID-19 outcomes among IBD patients
As COVID-19 continues to spread, gastroenterologists are assessing how the virus impacts patients with inflammatory bowel disease.
Recently the Surveillance Epidemiology of Coronavirus Under Research Exclusion-IBD (SECURE-IBD) registry was launched. This registry monitors and reports outcomes of COVID-19 in patients with IBD. The registry aims to answer questions patients with IBD and their caregivers may have.
Healio Gastroenterology and Liver Disease spoke with Ryan C. Ungaro, MD, a gastroenterologist with Mount Sinai Hospital’s Feinstein IBD Center, about the SECURE-IBD registry and factors under assessment to determine how they impact COVID-19 outcomes. – by Monica Jaramillo
Healio: What is the SECURE-IBD registry?
Ungaro: The SECURE-IBD registry is a joint collaboration between Mount Sinai and the University of North Carolina. My co-leads on the project are Dr. Michael Kappelman and Dr. Erica Brenner. We launched it about a week ago to better understand the impact of COVID-19 on IBD patients. This is a particular area of interest because IBD is a chronic immune mediated condition that may make patients more susceptible to certain infections. We are trying to understand the impact of IBD medications on the course of the COVID-19 as well as the impact of other comorbidities and disease activity. Are IBD patients at higher risk for getting the disease? Also, are they at higher risk of a more severe disease course similar to elderly people with cardiovascular disease or lung disease? This is all unknown currently.
It’s an ongoing international collaborative effort. At least one or two times a week we update our website with the current reported cases. Key to our efforts are partnerships with national and international gastroenterology societies to help get the word out about this, which include the Crohn’s and Colitis Foundation, the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, the International Organization for the Study of IBD, and the European Crohn’s and Colitis Organization. We have cases reported from all around the world. We want reporting to be as broad and geographically diverse as possible so that we can get an accurate picture of how COVID-19 is impacting IBD patients.
Healio: Who can report cases on the registry and what information is being collected?
Ungaro: Any physician can go on and report a case. We ask that the case be reported after at least a week since the onset of the disease to get a full sense of the disease course. The information we are collecting includes age, sex, race, comorbidities (such as hypertension, lung disease), smoking status, and medications, in particular their IBD medications. We are also asking for information about how active their IBD is at the time of the disease — whether the patient is in remission or not. We are looking at outcomes such as how long patients are symptomatic, were any of the medications stopped because they got COVID-19, did they require going to the emergency department, were they hospitalized, did they require ICU care or intubation, and death.
Healio: What will you be doing with the information collected form the registry?
Ungaro: We are analyzing if the rate of the bad outcomes, like hospitalization, ICU care or death, are more or less likely in IBD patients. Also, we want to understand how IBD medications are impacting the COVID-19 disease course. Are patients seeing more disease activity and are there certain types of immune suppressants medications that are impacting or not impacting the disease? Once we find a clear trend on some of these answers, we will share answers on our website. We will disseminate the information on our website, at conferences, and in academic publications. We are trying to use social media, in particular Twitter, to get the word out as well. Right now, we have over 40 cases reported on the registry in just about a week. We know these are extremely challenging times for the medical community, so we try to make reporting as fast and easy as possible. It takes at most 5 minutes to report the case on the website. It’s an evolving story but we are going to try to do real time updates and then more standard academic publications.
Healio: What do you hope to accomplish with the SECURE-IBD registry?
Ungaro: The ultimate goal is to provide information to GIs and patients to know how to best manage IBD patients in this challenging time so that we are not flying blind. It’s been great to see the international medical community especially in the IBD world to come together.
Disclosures: Ungaro reports he served as an advisory board member or consultant for Eli Lilly, Janssen, Pfizer, and Takeda; research grants from AbbVie, Boehringer Ingelheim, and Pfizer.