title: Perceptions of patients with inflammatory bowel diseases on biobanking.
abstract: BACKGROUND
  Little 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.
  
  
  METHODS
  Subjects 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.
  
  
  RESULTS
  A 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.
  
  
  CONCLUSIONS
  Majorities 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.
authors.affiliation: Departments of *Medicine, and †Social Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina; ‡GlaxoSmithKline Worldwide Epidemiology, Research Triangle, North Carolina; and §Department of Pediatrics, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
authors.forename: Millie D
authors.initials: MD
authors.lastname: Long
authors.forename: R Jean
authors.initials: RJ
authors.lastname: Cadigan
authors.forename: Suzanne F
authors.initials: SF
authors.lastname: Cook
authors.forename: Kaaren
authors.initials: K
authors.lastname: Haldeman
authors.forename: Kriste
authors.initials: K
authors.lastname: Kuczynski
authors.forename: Robert S
authors.initials: RS
authors.lastname: Sandler
authors.forename: Christopher F
authors.initials: CF
authors.lastname: Martin
authors.forename: Wenli
authors.initials: W
authors.lastname: Chen
authors.forename: Michael D
authors.initials: MD
authors.lastname: Kappelman
mesh_terms: D000328:Adult; D001294:Attitude to Health; D018070:Biological Specimen Banks; D035843:Biomedical Research; D003093:Colitis, Ulcerative / Q000175:diagnosis / Q000523:psychology*; D003256:Community Participation / Q000706:statistics & numerical data; D003424:Crohn Disease / Q000175:diagnosis / Q000523:psychology*; D003430:Cross-Sectional Studies; D003710:Demography; D005260:Female; D005500:Follow-Up Studies; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D010465:Perception