A5067821043- Inflammatory Bowel Disease
- Microscopic Colitis
- Eosinophilic Esophagitis
- COVID-19 and healthcare impacts
- Helicobacter pylori-related gastroenterology studies
- Healthcare Policy and Management
- Healthcare Systems and Technology
- Immunodeficiency and Autoimmune Disorders
- Healthcare cost, quality, practices
- Health Systems, Economic Evaluations, Quality of Life
- Gut microbiota and health
- Tuberculosis Research and Epidemiology
- Celiac Disease Research and Management
- Mobile Health and mHealth Applications
- Chronic Disease Management Strategies
- Primary Care and Health Outcomes
- Systemic Lupus Erythematosus Research
- Lymphoma Diagnosis and Treatment
- Pancreatitis Pathology and Treatment
- Autoimmune and Inflammatory Disorders
- Medication Adherence and Compliance
- Patient-Provider Communication in Healthcare
- Patient Satisfaction in Healthcare
- COVID-19 Clinical Research Studies
- Pregnancy and Medication Impact
Crohn's and Colitis Foundation
2016-2024
Icahn School of Medicine at Mount Sinai
2015
The Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network (PPRN) seeks to advance accelerate comparative effectiveness translational research in inflammatory bowel diseases (IBDs). Our IBD-focused PCORnet PPRN has been designed overcome the major obstacles that have limited patient-centered outcomes IBD by providing technical infrastructure, patient governance, patient-driven functionality needed to: 1) identify, prioritize, undertake a agenda through sharing...
Abstract BACKGROUND AND AIMS Crohn’s disease (CD) is a progressive that often leads to complications requiring pharmaceutical and surgical interventions. There no standard definition of progression. The & Colitis Foundation IBD Plexus program formed Workgroup address unmet need for CD patients who progress despite treatment. study aimed develop progression score using longitudinal, registry data linked claims assess if real world allows categorizing with METHODS in the HealthVerity®...
Abstract Background Clinical and molecular subcategories of inflammatory bowel disease (IBD) are needed to discover mechanisms predictors response relapse. We aimed develop a study prospective adult research cohort with IBD (SPARC IBD) including longitudinal clinical patient-reported data biosamples. Methods established adults from geographically diverse sample patients across the United States standardized biosample collection methods processing techniques. At enrollment at time lower...
INTRODUCTION: Many patients with Crohn's disease (CD) lose response or become intolerant to antitumor necrosis factor (TNF) therapy and subsequently switch out of class. We compared the effectiveness safety ustekinumab vedolizumab in a large, geographically diverse US population TNF-experienced CD. METHODS: conducted retrospective cohort study using longitudinal claims data from large insurer (Anthem, Inc.). identified CD initiating anti-TNF treatment prior 6 months. Our primary outcome was...
Abstract The design, development, implementation, use, and evaluation of high-quality, patient-centered clinical decision support (PC CDS) is necessary if we are to achieve the quintuple aim in healthcare. We developed a PC CDS lifecycle framework promote common understanding language for communication among researchers, patients, clinicians, policymakers. puts patient, and/or their caregiver at center illustrates how they involved all following stages: Computable Clinical Knowledge,...
Abstract Background The current burden of Crohn’s disease (CD) and ulcerative colitis (UC) in minority populations is largely unknown. We sought to evaluate the relative prevalence CD UC across racial ethnic groups within National Patient-Centered Clinical Research Network (PCORnet). Methods queried electronic health records from 337 centers January 2013 December 2018. compared racial/ethnic general PCORnet using χ 2 univariable logistic regression. Results Among 39,864,077 patients, 114,168...
Patient-Powered Research Networks (PPRNs) are US-based registry infrastructures co-created by advocacy groups, patient research partners, academic investigators, and other healthcare stakeholders. collect information directly from patients to conduct disseminate the results of patient-centered/powered that helps make more informed decisions about their healthcare. gather utilize real-world data patient-reported outcomes comparative effectiveness, safety, research, leverage Internet...
Abstract Background Primary and secondary non-response to Anti-Tumor Necrosis Factor (TNF) therapy is common in patients with ulcerative colitis (UC), yet limited research has compared the effectiveness of subsequent biological therapy. Objective We sought compare vedolizumab tofacitinib anti-TNF experienced UC, focusing on patient-prioritized patient reported outcomes (PROs). Methods conducted a prospective cohort study nested within Crohn’s & Colitis Foundation’s IBD Partners SPARC...
Abstract Background Antitumor necrosis factor (anti-TNF) inhibitors are first-line treatment among patients with ulcerative colitis (UC). With time, tend to lose response or become intolerant, necessitating switching small cell biologics such as tofacitinib vedolizumab. In this real-world study of a large, geographically diverse US population TNF-experienced UC, we evaluated the effectiveness and safety newly initiating vs Methods We conducted cohort using secondary data from large insurer...
Abstract Background Although it is a truism that drugs benefit patients only when taken, surprisingly little known about real-world drug-use persistence and discontinuation, even for expensive biologic drugs. Methods We used longitudinal self-reported data from the inflammatory bowel disease (IBD) Partners registry of people with IBD to construct Kaplan–Meier persistency graphs spans started between 2017 2022. Results examined 2034 1594 survey participants. Most had 75%+ rate around one-year...
Patients with inflammatory bowel disease (IBD) may be at risk for development of COVID-19 infection due to innate immune dysfunction and/or immunosuppressive medication use.
Identifying strategies to reduce health care disparities is a national priority. This study examines factors within higher performing Medicare Advantage dual-eligible special needs plans (SNPs) that contribute improved diabetic control. These structural and process elements include nonprofit status, interdisciplinary teams, medication management, home visiting clinicians, motivational interviewing. We suggest further research into the value of requiring all serving duals comply with...
Abstract Background Patients with inflammatory bowel disease (IBD) may be at risk for development of COVID-19 infection due to innate immune dysfunction and/or immunosuppressive medication use. We sought 1) evaluate the incidence in a large, U.S. cohort patients IBD and 2) associations between demographic, clinical, treatment-related factors infection. Methods Participants 3 adult studies sponsored by Crohn’s & Colitis Foundation, Partners, QORUS (Improving Quality Care Adults...
Introduction: In patients with ulcerative colitis (UC), clinical trials often focus on disease activity measures such as rectal bleeding and stool frequency. Patients UC frequently experience bowel urgency (BU), yet less is known about the prevalence of BU its association quality life (QoL) in real-world population. Methods: this cross-sectional study from nationwide inflammatory (IBD) Partners cohort, was measured utilizing validated 11-point Urgency Numeric Rating Scale (NRS)1. Scores were...
Introduction: In patients with Crohn’s disease (CD), clinical trials often focus on activity measures such as abdominal pain and stool frequency. Patients CD frequently experience bowel urgency (BU), yet less is known about the prevalence of BU its association quality life (QoL) in real-world populations. Methods: this cross-sectional study from nationwide inflammatory (IBD) Partners cohort, was measured utilizing validated 11-point Urgency Numeric Rating Scale (NRS)1. This categorized into...