In this initial sample, 300 of 317 participants (95%) had detectable anti-spike antibodies after completing their COVID vaccine series indicating that the vast majority of patients with IBD mount an immune response following complete immunization.

Antibody responses were relatively similar across IBD medication classes, although slightly decreased among individuals taking steroid medications such as prednisone.

Although many questions remain and ongoing research efforts will help to further optimize immunization strategies for patients with IBD, these findings provide reassurance that most patients mount detectable humoral immune response to mRNA vaccinations and support current recommendations to vaccinate patients regardless of immunosuppressive treatment.

Patient reported outcomes (PROs) are important measures of how well treatments work in inflammatory bowel disease (IBD). PROs are symptoms reported directly by patients, rather than tests like colonoscopies or blood work. The PRO Measurement Information System (PROMIS) is a scale for measuring PROs for physical, mental, and social health. A gastrointestinal (GI) PROMIS scale was recently developed based on responses from people across the United States. The GI PROMIS scale includes questions about eight common GI symptoms: gas, reflux, diarrhea, soilage, constipation, belly pain, nausea and vomiting, and difficulty swallowing. We studied these questions in 2,378 people with Crohn's disease (CD) and 1,455 people with ulcerative colitis (UC) in CCFA Partners. About half of the participants reported being in remission. Compared to participants in remission, those with active CD reported worse symptoms on the GI-PROMIS scale for all symptoms. The same was true for participants with active UC with the exception of difficulty swallowing. Participants with worse quality of life reported worse symptoms on the GI-PROMIS scale for all symptoms. Participants with more diarrhea, belly pain, and gas reported poorer mental and social PROs. In summary, participants who reported worse GI-PROMIS symptoms also reported worse qualify of life, disease activity, and mental and social outcomes. These results suggest that the GI-PROMIS scales could be an important way to measure symptoms in the future.

Between 20-35% of patients with ulcerative colitis (UC) have had a colectomy (surgery to remove part or all of the large intestine). The most common type of colectomy is called a "restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA)". This is a surgery to remove the large intestine and rectum and to create a small pouch out of the small intestine that is connected to the anus. This pouch is used to store stool and is often called a "J-pouch" (It is shaped like the letter "J"). Pouchitis (inflammation of the pouch) is the most common complication of this type of surgery and consists of symptoms of diarrhea and urgency. In this study, we wanted to know how many CCFA Partners participants have experienced pouchitis and what medications and characteristics are common among this group. To answer these questions we looked at survey responses submitted by more than 15,000 CCFA Partners participants. We found that 248 patients reported having an IPAA at some point in time. Of these patients, 82% also reported at least one episode of pouchitis. Patients with a history of pouchitis were more likely to use antibiotics. Patients who reported a recent episode of pouchitis (within the past six months) were more likely to report worse quality of life, depression, fatigue, and dissatisfaction with their social role. The majority of patients who have had a colectomy develop pouchitis at some point. During episodes of pouchitis, patients experience worse quality of life.

Depression is common among patients with Crohn's disease (CD). In this study, we wanted to understand if CD patients in remission who reported symptoms of depression were more likely to experience worsened CD symptoms later in time. To answer this question we looked at responses to CCFA Partners survey questions submitted by more than 2,000 CD patients about negative mood (I felt depressed), negative beliefs about the self (I felt worthless, I felt hopeless), and decreased life engagement/negativity (I felt hopeless) during the past seven days. Twelve months later, we asked about the severity of their CD activity using a standard CD questionnaire about diarrhea, pain, and well-being. We found that symptoms of depression predicted CD activity a year later. In other words, CD patients who were depressed were more likely to have CD symptoms a year later than those who were not depressed.

Earlier studies have shown that people who participate in surveys (such as CCFA Partners) may respond better to survey requests if these have a time limit (such as telling participants that surveys need to be done in 72 hours). This is called "scarcity." Other ways to improve survey response include messages targeting: paying it forward (that what you are doing will help people in the future), guilt, altruism (helping others), and self-serving (helping yourself). Our goal was to see if scarcity or these messages improved response rates within CCFA Partners. The scarcity group received a 'warning' email informing them that they will be sent a survey link the next day, and that they will have 72 hours to complete the survey. The control group received no warning email. We also tested the four different messages described above and a "control" message that just informed patients that it was time for their survey. We sent emails to a total of 8697 people within CCFA Partners asking them to complete their follow-up surveys. Of these, 2965 started their follow up survey. There was no difference between those in the 'scarcity group' as compared to control group. Scarcity was, however, more effective in the >50 age group. Of the messages, guilt resulted in a significantly higher response rate, while the other messages were no different than control. In summary, behavioral interventions applied to an internet-based IBD cohort have little benefit in improving response rates. Guilt had the strongest effect. The reasons that the other messages did not work may be that these interventions don't apply in an IBD population, that e-mail messages are not as effective, or that members of CCFA Partners are already very motivated to fill out surveys.