A5102900021- Inflammatory Bowel Disease
- Adolescent and Pediatric Healthcare
- Microscopic Colitis
- Chronic Disease Management Strategies
- Biosimilars and Bioanalytical Methods
- Eosinophilic Esophagitis
- Quality and Safety in Healthcare
- Gastrointestinal disorders and treatments
- Mobile Health and mHealth Applications
- Intestinal Malrotation and Obstruction Disorders
- Pregnancy and Medication Impact
- Healthcare Systems and Technology
- Diverticular Disease and Complications
- Gastrointestinal motility and disorders
- Primary Care and Health Outcomes
- Social Media in Health Education
- Health Literacy and Information Accessibility
- Celiac Disease Research and Management
- Colorectal Cancer Screening and Detection
- Esophageal and GI Pathology
University of North Carolina at Chapel Hill
2013-2017
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...
Restorative proctocolectomy with ileal pouch-anal anastomosis (IPAA) has become the standard surgical treatment for majority of patients inflammatory bowel disease (IBD) who require colectomy. We evaluated prevalence pouch-related symptoms among Crohn's and Colitis Foundation America Partners cohort effect on Patient-Reported Outcome Measurement Information System measures.We performed analyses nested in cohort. used bivariate to compare demographics medication use ulcerative colitis or...
Background: The Internet has successfully been used for patient-oriented survey research. Internet-based translational research may also be possible.
Background: Traditional cohort studies are important contributors to our understanding of inflammatory bowel diseases, but they labor intensive and often do not focus on patient-reported outcomes. Internet-based provide new opportunities study outcomes can be efficiently implemented scaled. If a traditional was linked an study, both could benefit from added synergy. Existing opportunity develop test processes for linkage. The Crohn’s Colitis Foundation America’s (CCFA) Partners is more than...
In 2011, our group successfully launched CCFA Partners, an Internet-based cohort of adult patients with inflammatory bowel diseases (IBD) focusing on patient reported exposures, health behaviors, and disease outcomes. Here we report the development early results a pediatric IBD Internet cohort. partnership Crohn’s Colitis Foundation America (CCFA), recruited children (<18 years age) self-reported through email invitations to individuals list promotion website, social media, other publicity...
CCFA Partners is an internet cohort of more than 12,000 patients with inflammatory bowel disease (IBD). Long-term retention critical. Prior research has shown that survey participants are likely to respond when the window for response narrow—“scarcity” opportunity response. Scarcity may reduce non-response due procrastination. Other methods previously demonstrated improve include targeted message themes: pay it forward, guilt, altruism, and self-serving (Fig. 1). It not known whether these...
Dietary interventions have been viewed as a possible therapeutic modality in adult inflammatory bowel diseases (IBD) patients, but so far clinical trials investigating diets failed to yield significant benefit. Adherence gluten free diet (GFD) without an underlying diagnosis of celiac disease has enjoyed rapid and widespread adoption the US recent years currently at least 0.5% population follow GFD. A new entity designated non-celiac sensitivity associated with GI-symptoms such bloating,...
Introduction: Patient-reported outcomes (PROs) are important measures to assess response in patients with IBD. Vedolizumab (VDZ) is a gut-selective monoclonal antibody that specifically binds α 4β7 integrin and blocks gut lymphocyte trafficking, approved for use moderate severe Crohn's disease (CD) ulcerative colitis (UC) who naïve or have previously been exposed tumor necrosis factor antagonists (anti-TNFs). Less known about the real-world experience of on VDZ changes PROs. Methods: We...