ArticleInflammatory bowel diseases2012
Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): methodology and initial results.
Article in Inflammatory bowel diseases, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 70 papers.
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Who cites it
70 citing papers in PubMed.
- Web-Based Video Education to Improve Uptake of Influenza Vaccination and Other Preventive Health Recommendations in Adults With Inflammatory Bowel Disease: Randomized Controlled Trial of Project PREVENT.Journal of medical Internet research · 2023Trial
- Trial
- A Diet Low in Red and Processed Meat Does Not Reduce Rate of Crohn's Disease Flares.Gastroenterology · 2019Trial
- Validation of an internet-based cohort of inflammatory bowel disease (CCFA partners).Inflammatory bowel diseases · 2014Trial
- Patient perception of chronic illness care in a large inflammatory bowel disease cohort.Inflammatory bowel diseases · 2013Trial
- Direct and indirect impacts of discrimination, internalized stigma, and disease disclosure on inflammatory bowel disease patient health outcomes.Journal of Crohn's & colitis · 2025Article
- Assessing prevalence and risk factors for REM sleep behavior disorder among patients with inflammatory bowel disease.NPJ Parkinson's disease · 2025Article
- Health Outcomes, Discrimination, and Stigma Among Sexual and Gender Minority People With Inflammatory Bowel Disease.Inflammatory bowel diseases · 2025Article
- Perspectives on Contraception, Pregnancy, and Reproductive Health Counseling from Young Women With Inflammatory Bowel Disease.Crohn's & colitis 360 · 2025Article
- mHealth Physical Activity and Patient-Reported Outcomes in Patients With Inflammatory Bowel Diseases: Cluster Analysis.Journal of medical Internet research · 2024Article
- Ulcerative Colitis Is Associated With Diet-related Inflammation and Physical Activity in the IBD Partners E-cohort.Inflammatory bowel diseases · 2024Article
- Do people with ME/CFS and joint hypermobility represent a disease subgroup? An analysis using registry data.Frontiers in neurology · 2024Article
- The Comorbidity of Patient-Reported Crohn's Disease Activity and Depression: The Role of Health Behavior Mediators.Crohn's & colitis 360 · 2024Article
- Comparing Patient-Reported Outcomes Among Anti-TNF-Experienced Patients with Crohn's Disease Initiating Vedolizumab Versus Ustekinumab.Digestive diseases and sciences · 2023Article
- Comparing Patient-Reported Outcomes Among Anti-TNF Experienced Patients With Ulcerative Colitis Initiating Vedolizumab Versus Tofacitinib.Crohn's & colitis 360 · 2023Article
- Computerized-adaptive testing versus short forms for pediatric inflammatory bowel disease patient-reported outcome assessment.Journal of clinical and translational science · 2023Article
- Sex- and gender-related differences in inflammatory bowel diseases.Frontiers in gastroenterology (Lausanne, Switzerland) · 2023Review
- The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform.JMIR research protocols · 2022Article
- Anxiety and Depressive Symptoms Are Not Associated With Future Pediatric Crohn's Disease Activity.Inflammatory bowel diseases · 2022Article
- Evaluation of health-related quality of life and influencing factors in patients with Crohn disease.The Journal of international medical research · 2022Article
10 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
backgroundThe widespread use of the Internet allows for unique research opportunities. We aimed to develop and follow an Internet-based cohort (e-cohort) of patients with self-reported inflammatory bowel diseases (IBD) over time.
methodsWe established an e-cohort of adults with IBD (CCFA Partners) by recruiting through Crohn's and Colitis Foundation of America (CCFA) email rosters, CCFA Website promotion, social media, and other publicity mechanisms. The baseline survey included modules on disease course and activity, diet and exercise, and patient-reported outcomes (PROs). Baseline characteristics of the cohort are summarized using descriptive statistics.
resultsA total of 7819 adults with IBD joined CCFA Partners through August, 2011. The median age was 42 years (interquartile range [IQR] 30-54), 5074 (72.3%) were female. A total of 4933 (63.1%) had Crohn's disease (CD), 2675 (34.2%) had ulcerative colitis (UC), and 211 (2.7%) had IBD unspecified. For CD, the mean short CD Activity Index (CDAI) was 151.9 (standard deviation [SD] 106.4), with 2274 (59.4%) in remission. For UC, the mean simple clinical colitis activity index (SCCAI) was 3.6 (SD 2.8), with 937 (42.9%) in remission. The mean short IBD questionnaire (SIBDQ) score was 48.7 (SD 11.8). SIBDQ was inversely correlated with disease activity (P < 0.01). The mean Morisky medication adherence score (MMAS) was 5.7 (SD 2.0). MMAS scores were inversely correlated with disease activity (P < 0.01).
conclusionsCCFA Partners is a novel e-cohort. Enrollment is ongoing, with surveys twice yearly. CCFA Partners represents a unique resource to study PROs and changes in disease management over time.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.