Ocean State Crohn’s & Colitis Area Registry
In October 2007, a U01 research contract from the CDC to the Crohn's & Colitis Foundation of America (CCFA) was assigned to the OSCCAR study— the Ocean State Crohn’s & Colitis Area Registry. Investigators at Mount Sinai School of Medicine, the Massachusetts General Hospital and Rhode Island Hospital have successfully collaborated in addressing the aims of this U01, which was awarded to study the epidemiology of IBD and the impact of practice variation on outcomes. The state of Rhode Island is an excellent location in which to conduct a population-based IBD study because 1) it is a small state geographically; 2) it has a diverse and stable population; and 3) a small number of gastroenterologists work in the state.
OSCCAR’s goal is to study variation in disease prognosis in IBD and to develop new prognostic models based upon clinical and biological characteristics. Because it includes patients drawn from a community population, rather than from tertiary care centers, the study cohort is more representative of the general population of patients with IBD. The study is also unique in that patients are enrolled within weeks of their new diagnosis (63 days, on average), allowing collection of specimens at an early time-point. Collection of DNA and RNA will permit investigators to evaluate the relationship of genetics and genomics to prognosis, capitalizing upon recent progress in IBD gene discovery and systems biology approaches to make links between discovered IBD genes and disease outcomes. In addition, collection of stool at the time of diagnosis permits the OSCCAR cohort to be linked to efforts in microbiome discovery that are at the heart of a key CCFA research initiative.
The importance and value of this unique cohort will continue to grow as the numbers of patients enrolled and duration of follow up increase. The acquisition of specimens shortly after diagnosis is a unique aspect of this cohort that reflects the general population of IBD, rather than a tertiary referral center population. As more time passes, important longer-term outcomes will be observed, allowing for more robust prediction of disease outcomes. This underscores the importance of identifying reliable sources of funding to sustain the cohort well beyond this 6 month period. The principal investigator will continue to work with the CCFA to identify sources of funding, and will also continue to apply for independent funding from federal sources as well as foundations, whenever possible.