Corrona, a provider of U.S. disease registries, has enrolled the first patient in its novel inflammatory bowel disease (IBD) registry, launched in May 2017.
This is the first national registry to collect data from patients with ulcerative colitis, Crohn’s disease and other IBDs. Corrona joined the Crohn’s and Colitis Center at Brigham and Women’s Hospital of Harvard Medical School and Pfizer to provide expertise, tools and resources that fit with the drug discovery process.
“I am immensely gratified and excited to be working with Corrona to establish this much-needed registry for our patients with inflammatory bowel disease,” Joshua Korzenik, director of the Crohn’s and Colitis Center at Brigham, said in a press release. “The IBD Registry represents a greatly valued resource for our patients who suffer with these diseases as well as the gastroenterologists who treat them.”
Added Dr. Tamas A. Koncz, chief medical officer at Pfizer: “We are happy to partner with Corrona to help establish the IBD Registry, which we believe will lead to a better understanding of the natural history of inflammatory bowel disease, associated co-morbidities and the current treatment paradigm.”
To learn more about the Corrona IBD Registry, contact the Southborough, Massachusetts, company by completing a brief online survey here.
Also launched this year was the first national registry assessing short- and long-term patient outcomes associated with fecal microbiota transplantation (FMT).
With funding from the National Institute of Allergy and Infectious Diseases of the National Institutes of Health, the American Gastroenterological Association (AGA) Fecal Microbiota Transplantation National Registry was established after published research suggesting that modifying gut microbiota could promote health and treat disease.
Scientists first developed FMT to treat Clostridium difficile infection, but other clinical applications have been explored. However, the enthusiastic adoption of FMT in clinical settings has outpaced scientific research, resulting in delayed understanding of the potential risks associated with stool transfers.
The AGA FMT registry helps close this gap by enabling researchers to identify potential short-term adverse outcomes and to look for potential safety concerns in the long run, such as irritable bowel syndrome, obesity, diabetes and other chronic conditions.
“The immediate goal of the FMT registry is to protect patient safety by providing a central place in which to collect patient outcomes and monitor potential issues that we may not even know about yet,” said co-principal investigator Dr. Colleen Kelly. “Long-term, the data we collect will be of enormous value, offering the scientific community a rich resource of information about manipulation of the gut microbiota in humans to promote health and treat disease.”