IBD Plexus Research Initiatives
IBD Plexus® currently includes millions of data points from four unique research initiatives comprised of thousands of patients. The work of the sites contributing to each of these research initiatives drives the value of our exchange network. With their early adoption, we are able to launch IBD Plexus with an unprecedented set of data points.
IBD Plexus will centralize and link data from diverse research studies to facilitate sharing across the research community.
Each of these is an independent study with unique goals. Patients are encouraged to enroll in multiple study cohorts when applicable, linking data across studies and allowing Plexus to achieve a critical mass of information to advance the science.
SPARC IBD – Study of a Prospective Adult Research Cohort with IBD – is a multicentered longitudinal study of adult IBD patients, which will collect and link clinical data, patient-reported outcome data, and serial biosamples through the course of the patients' disease. Data and samples will then be used for basic, clinical, and translational research with the goal of finding predictors of response to therapy and predictors of relapse that will lead to precision medicine strategies and new therapeutic targets that will improve the quality of life of patients with IBD.
IBD Qorus, the Foundation’s flagship quality of care program, is designed to drive improved care and health outcomes for patients living with IBD. This first-ever adult IBD learning health system leverages the power of a collaborative improvement network. It brings together providers and patients across the United States to focus on improving how care is delivered in order to produce outcomes-driven results.
The RISK Study is comprised of the largest well-characterized group of pediatric patients in the history of Crohn’s disease research. More than 1,800 patients, ages 6 to 17, were recruited at disease onset, and 913 are being prospectively followed for complications and response to therapies. Researchers at 28 clinics – 25 in the U.S. and three in Canada – collected biological samples, in addition to clinical, demographic, immunological, and genetic data.
IBD Partners is a patient-powered research network and an online registry of more than 16,000 IBD patients from across the country, including 15,400 adults and more than 900 kids and teens. The registry is comprised of patient-reported data captured via a series of online surveys on topics including diet, treatments, and a broad array of other issues concerning patients’ disease management and quality of life. In addition, this study also allows patients to connect their mobile health applications and wearable devices such as Fitbit. IBD Partners also puts an emphasis on the patient voice, allowing them to suggest and vote on research topics to aid researchers in generation of research questions, which they can then leverage the database to answer.