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| ID | Type | Description | Link |
|---|---|---|---|
| Award#P01193 | Other Identifier | Crohn's and Colitis Foundation |
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| Name | Class |
|---|---|
| Crohn's and Colitis Foundation | OTHER |
| Cedars-Sinai Medical Center | OTHER |
| Dartmouth College | OTHER |
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Innovative programs exist that suggest that care for people with chronic conditions is optimized when patients and providers have the information they need at the point of care and over time, to engage in shared planning and execution of treatment goals and care plans. This project aims to build an Inflammatory Bowel Disease Learning Health System, a shared information environment, that highlights collaboration among patients, clinicians and care team members, and researchers; for effective use of data for guiding care, value, improvement, and research.
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 90 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" Patient Reported Outcomes (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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Registry participant | This is a registry study, the same information is collected from all participants. |
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| Measure | Description | Time Frame |
|---|---|---|
| Number of patients enrolled | count of number of patients consented | annually, up to 5 years |
| Measure | Description | Time Frame |
|---|---|---|
| Proportion of patients in remission | assessed using a validated disease activity scale | annually, up to 5 years |
| Proportion of patients on steroids | assessed by patient report |
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Inclusion Criteria:
Exclusion Criteria:
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In order to participate in IBD Qorus, individuals must meet the following criteria:
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| Name | Affiliation | Role |
|---|---|---|
| Corey Siegel, MD, MS | Dartmouth-Hitchcock Medical Center | Principal Investigator |
| Gil Melmed, MD, MS | Cedars-Sinai Medical Center | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Cedars-Sinai Inflammatory Bowel Disease Center | Los Angeles | California | 90048 | United States | ||
| Hoag Digestive Health |
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| annually, up to 5 years |
| Proportion of patients admitted into the Emergency Room | assessed by patient report | annually, up to 5 years |
| Proportion of patients hospitalized | assessed by patient report | annually, up to 5 years |
| Proportion of patients with anemia | assessed by patient report and labs | annually, up to 5 years |
| Proportion of patients with malnutrition | assessed by patient report and labs | annually, up to 5 years |
| Newport Beach |
| California |
| 92658 |
| United States |
| UC San Diego Health Inflammatory Bowel Disease Center | San Diego | California | 92037 | United States |
| University of Colorado Health | Denver | Colorado | 80045 | United States |
| Yale School of Medicine IBD Program | New Haven | Connecticut | 06520 | United States |
| MedStar Georgetown University Hospital Center for Inflammatory Bowel Disease | Washington D.C. | District of Columbia | 20007 | United States |
| Gastro Health LLC | Miami | Florida | 33133 | United States |
| University of South Florida | Tampa | Florida | 33606 | United States |
| Atlanta Gastroenterology Associates | Atlanta | Georgia | 30342 | United States |
| Digestive Health Center | Boise | Idaho | 83704 | United States |
| University of Chicago Medicine Inflammatory Bowel Disease Center | Chicago | Illinois | 60637 | United States |
| Digestive Care Center | Evansville | Indiana | 47714 | United States |
| GastroIntestinal Specialists, A.M.C. | Shreveport | Louisiana | 71115 | United States |
| Corewell Health | Grand Rapids | Michigan | 49546 | United States |
| Dartmouth-Hitchcock Inflammatory Bowel Disease Center | Lebanon | New Hampshire | 03756 | United States |
| Saratoga Schenectady Gastroenterology Associates | Burnt Hills | New York | 12027 | United States |
| NYU Long Island- Inflammatory Bowel Disease Center | Mineola | New York | 11501 | United States |
| New York University Langone Medical Center | New York | New York | 10016 | United States |
| Weill Cornell Medical College | New York | New York | 10065 | United States |
| University of Rochester | Rochester | New York | 14642 | United States |
| The Oregon Clinic - Gastroenterology | Portland | Oregon | 97220 | United States |
| Penn State Hershey Inflammatory Bowel Disease Center | Hershey | Pennsylvania | 17033 | United States |
| Regional GI | Lancaster | Pennsylvania | 17601 | United States |
| Gastroenterology Associates | Providence | Rhode Island | 02904 | United States |
| Medical University of South Carolina | Charleston | South Carolina | 29425 | United States |
| University of Texas Southwestern Medical Center | Dallas | Texas | 75390 | United States |
| Baylor College of Medicine IBD Center | Houston | Texas | 77030 | United States |
| University of Utah Health Care | Salt Lake City | Utah | 84132 | United States |
| University of Virginia | Charlottesville | Virginia | 22903 | United States |
| ID | Term |
|---|---|
| D003424 | Crohn Disease |
| D003093 | Colitis, Ulcerative |
| D015212 | Inflammatory Bowel Diseases |
| ID | Term |
|---|---|
| D005759 | Gastroenteritis |
| D005767 | Gastrointestinal Diseases |
| D004066 | Digestive System Diseases |
| D007410 | Intestinal Diseases |
| D003092 | Colitis |
| D003108 | Colonic Diseases |
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