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ABSTRACT: Background
Much of our understanding about the natural history of pouch-related disorders has been generated from selected populations. We designed a geographically diverse, prospective registry to study the disease course among patients with 1 of 4 inflammatory conditions of the pouch. The primary objectives in this study were to demonstrate the feasibility of a prospective pouch registry and to evaluate the predominant treatment patterns for pouch-related disorders.Methods
We used standardized diagnostic criteria to prospectively enroll patients with acute pouchitis, chronic antibiotic-dependent pouchitis (CADP), chronic antibiotic refractory pouchitis (CARP), or Crohn's disease (CD) of the pouch. We obtained detailed clinical and demographic data at the time of enrollment, along with patient-reported outcome (PRO) measures.Results
We enrolled 318 patients (10% acute pouchitis, 27% CADP, 12% CARP, and 51% CD of the pouch). Among all patients, 55% were on a biologic or small molecule therapy. Patients with CD of the pouch were more likely to use several classes of therapy (P < .001). Among patients with active disease at the time of enrollment, 23% with CARP and 40% with CD of the pouch were in clinical remission at 6 months after enrollment.Conclusions
In a population where most patients had refractory inflammatory conditions of the pouch, we established a framework to evaluate PROs and clinical effectiveness. This infrastructure will be valuable for long-term studies of real-world effectiveness for pouch-related disorders.
SUBMITTER: Barnes EL
PROVIDER: S-EPMC9446900 | biostudies-literature | 2022 Jul
REPOSITORIES: biostudies-literature

Barnes Edward L EL Deepak Parakkal P Beniwal-Patel Poonam P Raffals Laura L Kayal Maia M Dubinsky Marla M Chang Shannon S Higgins Peter D R PDR Barr Jennifer I JI Galanko Joseph J Jiang Yue Y Cross Raymond K RK Long Millie D MD Herfarth Hans H HH
Crohn's & colitis 360 20220701 3
<h4>Background</h4>Much of our understanding about the natural history of pouch-related disorders has been generated from selected populations. We designed a geographically diverse, prospective registry to study the disease course among patients with 1 of 4 inflammatory conditions of the pouch. The primary objectives in this study were to demonstrate the feasibility of a prospective pouch registry and to evaluate the predominant treatment patterns for pouch-related disorders.<h4>Methods</h4>We u ...[more]