ArticleInflammatory bowel diseases2015
Perceptions of patients with inflammatory bowel diseases on biobanking.
Article in Inflammatory bowel diseases, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 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
12 citing papers in PubMed.
- Pediatric Participation in Biobanking Related to Inflammatory Bowel Diseases.Clinical pediatrics · 2025Article
- Public perceptions of biospecimen sampling and uncertainty in the context of personalised nutrition.PloS one · 2025Article
- Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions.The patient · 2021Article
- The Use of Saliva as a Biosample in the Light of COVID-19.Diagnostics (Basel, Switzerland) · 2021Review
- 'Sick and tired': Patients reported reasons for not participating in clinical psychiatric research.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes.Journal of patient experience · 2020Article
- Clinical Trial Participants' Views of the Risks and Benefits of Data Sharing.The New England journal of medicine · 2018Article
- Feasibility of salivary DNA collection in a population-based case-control study: a pilot study of pediatric Crohn's disease.Clinical epidemiology · 2018Article
- "Forward-Thinking" in U.S. Biobanking.Genetic testing and molecular biomarkers · 2017Article
- A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Article
- Harnessing person-generated health data to accelerate patient-centered outcomes research: the Crohn's and Colitis Foundation of America PCORnet Patient Powered Research Network (CCFA Partners).Journal of the American Medical Informatics Association : JAMIA · 2016Article
- Collecting Biospecimens From an Internet-Based Prospective Cohort Study of Inflammatory Bowel Disease (CCFA Partners): A Feasibility Study.JMIR research protocols · 2016Article
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.
Funding
Abstract
backgroundLittle is known about beliefs, understanding, and perceptions of biobanking among patients with inflammatory bowel diseases. We aimed to further understand perceptions of biobanking in the inflammatory bowel disease community.
methodsSubjects were recruited to participate in a 1:1 telephone interview on their perceptions of the risks and benefits of contributing specimens for research. These interviews informed a survey instrument evaluating perceptions of biobanking within Crohn's and Colitis Foundation of America Partners cohort. We used descriptive statistics to summarize participant responses, and bivariate statistics to compare willingness to participate in biobanking by disease and demographic factors.
resultsA total of 26 interviews were conducted. Various themes emerged from the interviews and aided in the development of the survey instrument. Concerns focused on storage, loss of confidentiality, outside uses, and life insurance discrimination. A total of 1007 individuals completed the survey. Overall, 397 (39.4%) reported that they would definitely donate samples, 568 (56.4%) would probably donate, 36 (3.6%) probably not, and 6 (0.6%) would definitely not donate. No significant differences in willingness to donate samples were seen for Crohn's disease versus ulcerative colitis (P = 0.25) or for remission versus active disease (P = 0.14). For sample-type preference, 956 (89.6%) would donate blood, 997 (93.5%) saliva, and 822 (77.1%) stool.
conclusionsMajorities of patients with inflammatory bowel disease demonstrated willingness to donate specimens for biobanking, albeit with concerns. Addressing these concerns will enhance participation and engagement and create greater alignment between the desires of research participants and the governance structure and operating policies of biobanks.
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What OpenQuestion holds
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.