Improving the Quality of Care for Adults With Inflammatory Bowel Disease (IBD:QUORUS)
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|ClinicalTrials.gov Identifier: NCT02791854|
Recruitment Status : Enrolling by invitation
First Posted : June 7, 2016
Last Update Posted : May 11, 2018
|Condition or disease|
|Crohn's Disease Ulcerative Colitis|
To demonstrate the impact of an Adult Inflammatory Bowel Disease (IBD) Learning Health System approach the study collaborators will design, build, implement, and evaluate in up to 30 IBD care sites the the following four key components of the IBD Learning Health System: 1) a Health Information Technology (HIT) environment that can "feed-forward" PROs and clinical data to be used at the point of care and integrated into a registry (IBD Plexus); 2) decision-support dashboards for use by patients and clinicians in real time to coproduce care; 3) meaningful reports for patients and clinicians; and 4) multi-stakeholder collaborative networks for improvement and research. The Learning Health System model also includes one more additional component that is desired, yet is outside the scope of this project; 5) patient facilitated networks that connect patients at their convenience.
Prior work from Sweden and the US show that successful uptake of the model can offer important benefits. Patients will be able to use web-based tools to monitor their health and manage their care, securely share data with clinicians in a timely manner, visualize outcomes that matter to them, and compare their results to other people. Clinicians will have new information that can improve their ability to track patient outcomes and costs over time; use PRO data to support pre-visit planning, shared decision-making at the point of care, and post-visit monitoring; and receive comparative performance reports to support quality improvement, public reporting, and professional development. Researchers will benefit by having PROs and cost data added to data registries to support clinical, translational, and comparative effectiveness research.
Study collaborators will evaluate and determine the technological, social/community, and policy roadmap that will allow the implementation of such a system at scale across multiple, diverse clinical settings. Understanding these factors will pave the way for broad uptake of a feed-forward coproduction information systems that supports coproduction of optimal health and high value care for IBD patients.
|Study Type :||Observational [Patient Registry]|
|Estimated Enrollment :||5000 participants|
|Target Follow-Up Duration:||5 Years|
|Official Title:||Improving the Quality of Care for Adults With Inflammatory Bowel Disease|
|Actual Study Start Date :||February 26, 2016|
|Estimated Primary Completion Date :||December 2020|
|Estimated Study Completion Date :||December 2020|
This is a registry study, the same information is collected from all participants.
- Number of patients enrolled [ Time Frame: annually, up to 5 years ]count of number of patients registered
- Proportion of patients in remission [ Time Frame: annually, up to 5 years ]assessed using a validated disease activity scale
- Proportion of patients on steroids [ Time Frame: annually, up to 5 years ]
- Proportion of patients admitted into the Emergency Room [ Time Frame: annually, up to 5 years ]
- Proportion of patients hospitalized [ Time Frame: annually, up to 5 years ]
- Proportion of patients with anemia [ Time Frame: annually, up to 5 years ]
- Proportion of patients with malnutrition [ Time Frame: annually, up to 5 years ]
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT02791854
Show 20 Study Locations
|Principal Investigator:||Corey Siegel, MD, MS||Dartmouth-Hitchcock Medical Center|
|Principal Investigator:||Gil Melmed, MD, MS||Cedars-Sinai Medical Center|