How The Registry Works

A registry enrolls people with a common characteristic—in this case, a recent diagnosis of Crohn’s disease or ulcerative colitis, also called inflammatory bowel disease or IBD—and collects information about them over time. The OSCCAR study is especially important because it provides “real world” information about patients with IBD.

Since IBD is not very common, it is essential for the study to enroll as many patients as possible. It is also important to include patients of all ages, and from all walks of life. Together, you and others facing the challenges of IBD can provide valuable information that will help doctors better understand the disease and in turn, help patients with IBD now and in the future.

TO ENROLL: Just complete the enrollment form, or call us at 1-401-444-4186 or email osccar@lifespan.org. It is important that you enroll within 4 weeks of diagnosis, however you may still enroll within 6 months of diagnosis.

NEXT: Once we receive your enrollment form, we will contact you to arrange a private visit in your home or another convenient location. Knowledgeable study staff will provide you with detailed, private, one-on-one education. You will also be asked to sign a consent form to give us permission to collect your responses to questions, and to review your medical and pharmacy records. We will also collect a small amount of blood, urine, and if possible, stool.

THEN: In six months, we will contact you to complete brief questionnaires. Once a year, we will schedule a return appointment so that we can continue to provide you with individual, private education. We will also collect your responses to questions, and collect additional specimens.

Please consider enrolling today: Fill out the enrollment form and have your doctor fax it, or call us at 401-444-4186.