The Ocean State Crohn’s & Colitis Area Registry (OSCCAR)
Information for Physicians
Welcome to the t he Ocean State Crohn’s and Colitis Area Registry, or “OSCCAR,” a research study being conducted in joint collaboration between Lifespan and Massachusetts General Hospital, sponsored by the National Institutes of Health (NIH).
Individual and group physician practices and institutions have joined together with patients across Rhode Island to participate in the development of this IBD registry.
OSCCAR Study Goals The goal of this study is to identify each person with a new diagnosis of Crohn’s disease or ulcerative colitis in the state of Rhode Island. Adult and pediatric study volunteers will be followed over time to identify outcomes of theses illnesses and to determine what factors may improve these outcomes.
For those who have joined and are yet to join, we both welcome and thank you for your participation.
Why refer patients to OSCCAR? Patients will receive:
- Personal, private, and detailed education, at their convenience (link to educational presentation sample)
- A valuable reference manual—What You Need to Know about Crohn’s Disease and Ulcerative Colitis—at no cost. (link to patient book sample
- A $100 honorarium upon completion of the enrollment visit and $50 upon completion of subsequent annual visits.
OSCCAR will provide the opportunity to advance the knowledge of Crohns disease and ulcerative colitis by:
- describing the incidence rates
- describing disease outcomes; and
- identifying factors that predict disease outcomes.
Rhode Island is leading the way: a novel population inception cohort Because of its size and diverse population, Rhode Island is an ideal place to do research to obtain information about the causes of IBD and why the course of illness varies among individuals.
Newly diagnosed patients with Crohn’s and ulcerative colitis who live in Rhode Island are a unique, population cohort which may be followed prospectively over time---the first of its kind in the United States, and one of very few such cohorts in the world.
The ocean state is leading the way as physicians, institutions and patients in Rhode Island are joining together to contribute to increase our understanding of the natural history and prognosis of IBD by participating and referring patients.
Patient Referal Process
We thank you in advance for considering participating in the study by referring your patients who are newly diagnosed with Crohn’s disease or Ulcerative Colitis
Completing an enrollment contact form gives the OSCCAR study staff permission to contact the patient , answer any questions they may have about participating in OSCCAR, and arrange a visit. Signing the form does not obligate the patient to participate in the study. (insert links)
Patients Eligible for Referral:
- Have been diagnosed with Crohn’s disease or ulcerative colitis within the past 6 months. Please consider referring patients as soon as possible after r diagnosis (enrollment within 4 weeks is optimal).
- Live in Rhode Island.
Do not need to have received any medicines or other treatments for your IBD in order to be eligible. Steps for Patient Referral
Completing the enrollment contact form will give us the permission to contact the patient, answer any questions they may have about participating in OSCCAR, and arrange a home visit. Signing the form does not obligate the patient to participate in the study.
- 1) Please complete the enrollment contact form and send by fax or email or call us at 1-401-444-4186 or email osccar@lifespan.org.
It is important that patients are enrolled within 4 weeks of diagnosis, however patients may still enroll within 6 months of diagnosis.
- Once we receive the enrollment contact form, we will contact you r patient to arrange a private visit in their home or another convenient location. Knowledgeable study staff will provide you r patient with detailed, private, one-on-one education. You r patient will also be asked to sign a consent form to give us permission to collect responses to questions, and to review medical and pharmacy records. We will also collect a small amount of blood, urine, and if possible, stool.
- In six months, we will contact you r patient 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.
More information: See study procedure descriptions (PDF)
OSCCAR Home Page 
As a participating study site, Rhode Island Hospital has agreed to host this website. |
