title: Collecting Biospecimens From an Internet-Based Prospective Cohort Study of Inflammatory Bowel Disease (CCFA Partners): A Feasibility Study.
abstract: BACKGROUND
  The Internet has successfully been used for patient-oriented survey research. Internet-based translational research may also be possible.
  
  
  OBJECTIVE
  Our aim was to study the feasibility of collecting biospecimens from CCFA Partners, an Internet-based inflammatory bowel disease (IBD) cohort.
  
  
  METHODS
  From August 20, 2013, to January 4, 2014, we randomly sampled 412 participants, plus 179 from a prior validation study, and invited them to contribute a biospecimen. Participants were randomized to type (blood, saliva), incentive (none, US $20, or US $50), and collection method for blood. The first 82 contributors were also invited to contribute stool. We used descriptive statistics and t tests for comparisons.
  
  
  RESULTS
  Of the 591 participants, 239 (40.4%) indicated interest and 171 (28.9%) contributed a biospecimen. Validation study participants were more likely to contribute than randomly selected participants (44% versus 23%, P<.001). The return rate for saliva was higher than blood collected by mobile phlebotomist and at doctors' offices (38%, 31%, and 17% respectively, P<.001). For saliva, incentives were associated with higher return rates (43-44% versus 26%, P=.04); 61% contributed stool. Fourteen IBD-associated single nucleotide polymorphisms were genotyped, and risk allele frequencies were comparable to other large IBD populations. Bacterial DNA was successfully extracted from stool samples and was of sufficient quality to permit quantitative polymerase chain reaction for total bacteria.
  
  
  CONCLUSIONS
  Participants are willing to contribute and it is feasible to collect biospecimens from an Internet-based IBD cohort. Home saliva kits yielded the highest return rate, though mobile phlebotomy was also effective. All samples were sufficient for genetic testing. These data support the feasibility of developing a centralized collection of biospecimens from this cohort to facilitate IBD translational studies.
authors.affiliation: Department of Pediatrics, Duke University School of Medicine, Duke University, Durham, NC, United States. rachelrandell88@gmail.com.
authors.forename: Rachel L
authors.identifier: http://orcid.org/0000-0002-8009-8209
authors.initials: RL
authors.lastname: Randell
authors.forename: Ajay S
authors.identifier: http://orcid.org/0000-0002-7612-6369
authors.initials: AS
authors.lastname: Gulati
authors.forename: Suzanne F
authors.identifier: http://orcid.org/0000-0003-3561-2835
authors.initials: SF
authors.lastname: Cook
authors.forename: Christopher F
authors.identifier: http://orcid.org/0000-0003-4965-4198
authors.initials: CF
authors.lastname: Martin
authors.forename: Wenli
authors.identifier: http://orcid.org/0000-0002-6486-0582
authors.initials: W
authors.lastname: Chen
authors.forename: Elizabeth L
authors.identifier: http://orcid.org/0000-0003-1719-297X
authors.initials: EL
authors.lastname: Jaeger
authors.forename: Alexi A
authors.identifier: http://orcid.org/0000-0003-2998-638X
authors.initials: AA
authors.lastname: Schoenborn
authors.forename: Patricia V
authors.identifier: http://orcid.org/0000-0002-4704-2414
authors.initials: PV
authors.lastname: Basta
authors.forename: Hendrik
authors.identifier: http://orcid.org/0000-0002-4793-3786
authors.initials: H
authors.lastname: Dejong
authors.forename: Jingchun
authors.identifier: http://orcid.org/0000-0001-5138-6458
authors.initials: J
authors.lastname: Luo
authors.forename: Marisa
authors.identifier: http://orcid.org/0000-0003-3221-2879
authors.initials: M
authors.lastname: Gallant
authors.forename: Robert S
authors.identifier: http://orcid.org/0000-0002-1323-6245
authors.initials: RS
authors.lastname: Sandler
authors.forename: Millie D
authors.identifier: http://orcid.org/0000-0001-5983-2758
authors.initials: MD
authors.lastname: Long
authors.forename: Michael D
authors.identifier: http://orcid.org/0000-0002-0469-6856
authors.initials: MD
authors.lastname: Kappelman
keywords: CCFA Partners; Internet cohort; biobank; inflammatory bowel disease