Crohn's & Colitis Foundation Expands Patient-Powered Research Network
Published: February 12, 2018
NEW YORK, NY – The Crohn's & Colitis Foundation has updated its patient-powered research network, formerly known as CCFA Partners. Now IBD Partners, the online portal and robust patient network community of more than 15,000 IBD adult patients across the country offers new health-tracking features to enhance the participants' experiences, helps track their personal health information, and allows them to participate in IBD research.
"IBD Partners helps foster greater transparency, community building, and patient engagement in the research process, and allows patients to take on the role of citizen scientist," said Michael Kappelman, MD, professor at the University of North Carolina at Chapel Hill and a principal investigator of IBD Partners. "With these new features and enhancements, existing and new patient participants are better able to be active, informed, and empowered in both IBD research and their own disease management."
The new features of IBD Partners include:
- A new name to put enhanced emphasis on the mission of the network, which is to empower IBD patients, researchers, and healthcare providers to PARTNER in finding answers to research questions that patients care about, and ultimately to improve the health and quality of life for patients living with IBD.
- New and improved health-tracking graphs, so patients can now track more health measures, including pain, fatigue, and anxiety, on a daily basis. Patients can even add their own unique events, such as yoga, and connect to their favorite mobile health app or device to track steps, calories, and sleep.
- Enhanced research prioritization to more easily sort and view research ideas submitted by patients, descriptions of study activities, and easy-to-understand summaries of published research. The new features also allow patients to more easily propose their own research ideas.
- A personal dashboard where patients can easily view their personal health information, notifications, and badges, as well as a snapshot of what is happening within the network.
"We listened to our patient members on what improvements would enhance their experience and support their ongoing participation in IBD Partners, as well as what might help engage new members," said Angela Dobes, Senior Director of IBD Plexus for the Foundation. "Patient involvement is critical to the research process, and it is important to us to provide the forum and the tools to support them."
"IBD Partners has not only given me the opportunity to better manage my own disease, but to also be a part of something bigger," said Jessica Burris, a member of the Patient Governance Committee of IBD Partners. "I had always been curious why many IBD patients can only achieve remission via medication, while some are able to manage their symptoms with dietary changes. I posed the question in the community, which led to the first ever national study of dietary interventions in Crohn's patients. It's empowering and gratifying to know that I played a role in research that can help patients like me."
Patients can sign up for membership at www.ibdpartners.org.
About IBD Partners
IBD Partners is an online registry of more than 15,000 adult inflammatory bowel disease (IBD) patients from across the country. It is the largest registry of its kind in IBD. There is a parallel registry for kids and teens. Upon enrolling in the program, patients complete a series of online surveys, providing information on a variety of topics. Survey topics can include: what they eat, what treatments they are receiving, and a broad array of other issues concerning patients' disease management and quality of life. The registry is comprised exclusively of patient-reported data, giving patients an opportunity to play a key role in helping the IBD community better understand these diseases and how best to manage them.
IBD investigators across the country access the data in the registry with a single focus: using this information to inform their research and develop ways to improve the quality of IBD patients' lives.
Crohn's & Colitis Foundation
The Crohn's & Colitis Foundation is a non-profit, volunteer-fueled organization dedicated to finding the cures for Crohn's disease and ulcerative colitis, and to improving the quality of life of children and adults affected by these diseases. It was founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, M.D.