News

Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet

A team from ImproveCareNow led by Heather Kaplan, MD, MSCE and Lisa Opipari-Arrigan, PhD will take part in a $2.5 million research project in partnership with the Health eHeart Alliance, to conduct a study using an innovative combination of “N-of-1” study designs and mobile health technology. ImproveCareNow will focus on using a series of N-of-1 studies to understand the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in patients with Crohn’s disease and ulcerative colitis (also known as Inflammatory Bowel Disease or IBD) as compared to a liberalized SCD and unrestricted diet.

Patient-Centered Outcomes Research Institute Funds Project as a Demonstration of PCORnet

The ImproveCareNow Network will take part in a $4 million research project to determine the optimal type and frequency of mindfulness-based treatment for managing stress. ImproveCareNow is one of 20 PCORI-funded Patient-Powered Research Networks (PPRNs) participating in this study, which will also demonstrate the capabilities of PCORnet, the National Patient-Centered Clinical Research Network.

ImproveCareNow has entered into a sponsorship agreement with the Crohn’s & Colitis Foundation of America (CCFA). It was announced by Dr. Richard Colletti, Executive Network Director for ImproveCareNow. This sponsorship will enable parent partners to attend ImproveCareNow Community Conferences and will partially support the cost of conference registration for professionals at centers participating in ImproveCareNow. Funding from CCFA will be provided for a three year period.

Michael D. Kappelman, MD, MPH of the University of North Carolina at Chapel Hill (read the UNC press release here) and the ImproveCareNow Network has been awarded $7.9 million in funding from the Patient Centered Outcomes Research Institute (PCORI) to conduct a five year study comparing Anti-TNF Monotherapy versus Combination Therapy with Low Dose Methotrexate in Pediatric Crohn’s Disease.

Dr. Richard Colletti, Executive Network Director for ImproveCareNow, has announced the Network’s intention to establish priorities for research that will guide the investment of organizational research resources.

Dr. Richard Colletti, Executive Network Director for ImproveCareNow, announced earlier this month that an innovative study by ImproveCareNow, using the ImproveCareNow registry database ("ICN2"), has been published in Pediatrics. In addition, the article is being highlighted by the American Gastroenterological Society (AGA). Below are the abstract and the AGA highlights. Congratulations to all of the ImproveCareNow community members, including patients, parents, clinicians, researchers and all committed improvers, who made this possible.

Attention parents! Do you ever wish you knew more about the diagnosis, treatment, or management of your child’s IBD? Maybe you’ve wondered whether a certain drug or lifestyle change would help your child. Or maybe you are looking for information about the best ways to help your child take more responsibility for managing his or her IBD. These are important questions that research can help answer and there are many more just waiting to be asked!

In July 2013 ImproveCareNow began collaborating with adult gastroenterologists on a 1-year pilot project to evaluate the feasibility of a Quality Improvement (QI) network involving centers caring for adult patients with Crohn’s disease and ulcerative colitis.

Care centers participating in ImproveCareNow must assemble a multidisciplinary group of people who comprise what we call the “core QI team”. This team meets regularly, reviews data to identify areas for improvement, uses PDSA cycles to test and determine what changes will result in improvements, and steadily implements meaningful changes that result in more reliable and effective care for their IBD patients.