Crohn’s and Colitis Foundation Updates Research Network, Now Called IBD Partners

Crohn’s and Colitis Foundation Updates Research Network, Now Called IBD Partners
The Crohn's and Colitis Foundation recently updated its patient-powered research network, formerly known as CCFA Partners and now known as IBD Partners. IBD Partners is an online registry of more than 15,000 adult inflammatory bowel disease (IBD) patients from the U.S. and is the largest of its kind. The platform includes a registry for adolescents and children. After enrolling in the platform, patients complete a series of surveys, providing information on several topics, which can include what they eat, what treatments they are receiving, and other issues concerning disease management and quality of life. The registry is comprised exclusively of patient-reported data, which gives patients a chance to play a fundamental role in advancing research and helping the scientific community better understand IBD and how to best manage the condition. "IBD Partners ... allows patients to take on the role of citizen scientist," Michael Kappelman, MD, one of IBD Partners' principal investigators, said in a press release. As IBD Partners, the platform now includes:
  • New and improved health-tracking graphs, so patients can track additional health measures on a daily basis (as well unique events like yoga classes) and connect the data with their favorite mobile app to track steps, calories, or sleep;
  • Enhanced prioritization to sort and review research ideas submitted by patients and descriptions of study activities and summaries of published research;
  • A per
    Subscribe or to access all post and page content.

Leave a Comment

Your email address will not be published. Required fields are marked *