Achieving Synergy: Linking an Internet-Based Inflammatory Bowel Disease Cohort to a Community-Based Inception Cohort and Multicentered Cohort in Inflammatory Bowel Disease.
Traditional cohort studies are important contributors to our understanding of inflammatory bowel diseases, but they are labor intensive and often do not focus on patient-reported outcomes. Internet-based studies provide new opportunities to study patient-reported outcomes and can be efficiently implemented and scaled. If a traditional cohort study was linked to an Internet-based study, both studies could benefit from added synergy. Existing cohort studies provide an opportunity to develop and test processes for cohort linkage. The Crohn's and Colitis Foundation of America's (CCFA) Partners study is an Internet-based cohort of more than 14,000 participants. The Ocean State Crohn's and Colitis Area Registry (OSCCAR) is an inception cohort. The Sinai-Helmsley Alliance for Research Excellence (SHARE) is a multicentered cohort of inflammatory bowel disease patients. Both the later cohorts include medical record abstraction, patient surveys, and biospecimen collection.



Given the complementary nature of these existing cohorts, we sought to corecruit and link data.



Eligible OSCCAR and SHARE participants were invited to join the CCFA Partners study and provide consent for data sharing between the 2 cohorts. After informed consent, participants were directed to the CCFA Partners website to complete enrollment and a baseline Web-based survey. Participants were linked across the 2 cohorts by the matching of an email address. We compared demographic and clinical characteristics between OSCCAR and SHARE participants who did and did not enroll in CCFA Partners and the data linkage.



Of 408 participants in the OSCCAR cohort, 320 were eligible for participation in the CCFA Partners cohort. Of these participants, 243 consented to participation; however, only 44 enrolled in CCFA Partners and completed the linkage. OSCCAR participants who enrolled in CCFA Partners were better educated (17% with doctoral degrees) than those who did not (3% with doctoral degrees, P=.01). In the SHARE cohort, 436 participants enrolled and linked to the Partners cohort. More women (60% vs 50%) linked and those who linked were predominantly white (96%; P<.01). Crohn's disease patients who linked had lower mean scores on the Harvey-Bradshaw Index (3.6 vs 4.4, P<.01). Ulcerative colitis patients who linked had less extensive disease than those who did not link (45% vs 60%, P<.01).



Linkage of CCFA Partners with cohorts such as OSCCAR and SHARE may be a cost-effective way to expand the infrastructure for clinical outcomes and translational research. Although linkage is feasible from a technical, legal, and regulatory perspective, participant willingness appears to be a limiting factor. Overcoming this barrier will be needed to generate meaningful sample sizes to conduct studies of biomarkers, natural history, and clinical effectiveness using linked data.
University of North Carolina, Center for Gastrointestinal Biology and Disease, Chapel Hill, NC, United States. bharati.kochar@unchealth.unc.edu.
Bharati
0000-0002-4476-5713
B
Kochar
Molly
0000-0002-7749-9546
M
Aldridge
Suzanne Follan
0000-0003-3561-2835
SF
Cook
Renee
0000-0002-0220-4002
R
Bright
Meaghan
0000-0002-0213-7209
M
Mallette
Heather
0000-0002-0963-1461
H
Moniz
Samir A
0000-0003-2336-3544
SA
Shah
Neal S
0000-0001-7699-1400
NS
LeLeiko
Jason
0000-0002-7211-7430
J
Shapiro
Bruce E
0000-0001-5762-5042
BE
Sands
Wenli
0000-0002-6486-0582
W
Chen
Elizabeth
0000-0003-1719-297X
E
Jaeger
Joseph
0000-0003-2304-4375
J
Galanko
Millie D
0000-0001-5983-2758
MD
Long
Christopher F
0000-0003-4965-4198
CF
Martin
Robert S
0000-0002-1323-6245
RS
Sandler
Michael D
0000-0002-0469-6856
MD
Kappelman
D000328:Adult; D015331:Cohort Studies; D003093:Colitis, Ulcerative; D003424:Crohn Disease; D005260:Female; D006801:Humans; D015212:Inflammatory Bowel Diseases; D016247:Information Storage and Retrieval; D020407:Internet; D008297:Male; D008499:Medical Records; D000071066:Patient Reported Outcome Measures; D018579:Patient Selection; D012042:Registries; D012107:Research Design; D011795:Surveys and Questionnaires
Crohn’s disease; cohort study; inflammatory bowel disease; ulcerative colitis