Trial reportInflammatory bowel diseases2014
Validation of an internet-based cohort of inflammatory bowel disease (CCFA partners).
Trial report in Inflammatory bowel diseases, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 51 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
51 citing papers in PubMed, 82 citations in OpenAlex.
- 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
- Nutrition management and self-perceived relapse triggers in patients with inflammatory bowel disease: results from the 3R web-based survey.Crohn's & colitis 360 · 2026Article
- Symptom cluster profiles in adolescents with inflammatory bowel disease: Cross-sectional study using ImproveCareNow data.Journal of pediatric gastroenterology and nutrition · 2026Article
- Understanding caregiver vaccine hesitancy and experiences in children with paediatric rheumatic diseases: results from the C19-GRA Global Pediatric Survey.EULAR rheumatology open · 2026Article
- 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
- Factors influencing biospecimen collection in decentralized pregnancy and birth cohorts: A qualitative study.Journal of clinical and translational science · 2025Article
- Childhood and adolescent residential and farm pesticide exposures and inflammatory bowel disease incidence in a U.S. cohort of women.The Science of the total environment · 2024Article
- Persistent dysbiosis of duodenal microbiota in patients with controlled pediatric Crohn's disease after resolution of inflammation.Scientific reports · 2024Article
- Pesticide use and inflammatory bowel disease in licensed pesticide applicators and spouses in the Agricultural Health Study.Environmental research · 2024Article
- Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey.Rheumatology international · 2023Article
- Early life exposures as risk factors for non-esophageal eosinophilic gastrointestinal diseases.Clinics and research in hepatology and gastroenterology · 2023Article
- Comparing Patient-Reported Outcomes Among Anti-TNF Experienced Patients With Ulcerative Colitis Initiating Vedolizumab Versus Tofacitinib.Crohn's & colitis 360 · 2023Article
- Feasibility and Efficacy of Online Strategies to Recruit Parents of Children With Rheumatic Diseases for Research.ACR open rheumatology · 2022Article
- The Promises and Perils of Social Media for Pediatric Rheumatology.Rheumatic diseases clinics of North America · 2022Review
- Longitudinal Trajectory of Fatigue in Patients With Inflammatory Bowel Disease: A Prospective Study.Inflammatory bowel diseases · 2021Article
- A Patient-Prioritized Agenda for Information Needs During the COVID-19 Pandemic: A Qualitative Study of Patients With Inflammatory Bowel Disease.Crohn's & colitis 360 · 2021Article
- The Reliability of Patient Self-reported Utilization in an Inflammatory Bowel Diseases Learning Health System.Crohn's & colitis 360 · 2021Article
- Challenges and Opportunities in Social Media Research in Gastroenterology.Digestive diseases and sciences · 2021Article
- Adjunctive Pharmacotherapy Use in Patients With Ileal Pouch-Anal Anastomosis (IPAA).Crohn's & colitis 360 · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundAs traditional methods have become increasingly difficult, the Internet offers a mechanism for conducting survey research quickly and efficiently. However, the validity of this research depends on the ability of respondents to accurately report health status. We used a large Internet-based inflammatory bowel disease (IBD) cohort to validate self-reported IBD against physician reports.
methodsBetween June 22, 2012, and April 01, 2013, all participants of CCFA Partners (n = 6681) were invited to participate, and 450 were selected by random stratified sampling. We sent physicians a survey to confirm IBD diagnosis and characteristics. We used descriptive statistics to compare data.
resultsA total of 4423 participants (66%) indicated interest. Of 450 selected, 261 (58%) consented, and physician reports were obtained for 184 (71%). Physicians confirmed IBD status in 178 (97%) and type in 171 (97% of confirmed). The matching between patient and physician reports for Crohn's disease (CD) was 82% for disease location, 89% for the presence of perianal disease, and 46% for disease behavior. For ulcerative colitis (UC), disease location matched 54% of the time. Physician reports confirmed the status of ever having bowel surgery for 97% of CD and 94% for UC and confirmed current pouch or ostomy in 84% of CD and 81% of UC.
conclusionsSelf-reported IBD in CCFA Partners is highly accurate, and participants are willing to release medical records for research. Self-reported phenotypic characteristics were less valid. The validity of IBD diagnoses among the participants of CCFA Partners supports the use of this cohort for patient-centered outcome research.
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Registered trials
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.