A new initiative is underway to collect data from 40,000 patients suffering from inflammatory bowel disease and build a collaborative platform for researchers to break down silos within the research community.
The Crohns and Colitis Foundation is leading the initiative. Crohns disease is a chronic inflammatory condition of the gastrointestinal tract that can affect any part of the body from the mouth to the anus, according to the Foundation. Ulcerative colitis is a chronic inflammatory condition limited to the colon, also called the large intestine.
The foundation already has de-identified data from 16,000 patients. Now, it has a new goal to get a research cohort of 40,000 patients, providing not just data but also a biological specimen such as blood, stool or a biopsy of the bowel, says Dr. James Lewis, professor of medicine and clinical epidemiology at the University of Pennsylvania. Hes also chief scientist for IBD Plexus, the collaborative research platform being developed.
If successful, the IBD Plexus platform will be the largest registry of IBD patients of all ages in the world, and will enable clinicians to practice precision medicine. In the United States, the project aligns nicely with the Obama administrations Precision Medicine Initiative, an ambitious effort to have one million Americans agree to share their genomic information. Thats important for IBD research because IBD diseases, affecting an estimated 1.6 million in the nation, often run in families.
Also See: Policymakers Grapple Over Precision Medicine Privacy Rules
The concept is to take these existing and new cohorts and the linked data and samples, and bring them into a single home to cross-integrate data elements, with a concept of making data available worldwide, not just among people who generate the data or receive it, Lewis says.
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