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Region Hovedstaden - en del af Københavns Universitetshospital
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Validation of the "United Registries for Clinical Assessment and Research" (UR-CARE), a European online registry for clinical care and research in Inflammatory Bowel Disease

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

DOI

  1. Direct and Indirect Costs of Inflammatory Bowel Disease: Ten Years of Follow Up in a Danish Population-Based Inception Cohort

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  2. ECCO Guidelines on Therapeutics in Crohn's Disease: medical treatment

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  3. The Pathogenesis of Extraintestinal Manifestations: Implications for IBD research, diagnosis and therapy

    Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

  1. Direct and Indirect Costs of Inflammatory Bowel Disease: Ten Years of Follow Up in a Danish Population-Based Inception Cohort

    Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

  2. ECCO Guidelines on Therapeutics in Crohn's Disease: medical treatment

    Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

  3. Investigating Intestinal Glucagon after Roux-en-Y Gastric Bypass Surgery

    Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

  4. Changing epidemiology of immune-mediated inflammatory diseases in immigrants: A systematic review of population-based studies

    Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

  5. Incidence of Immune-mediated Inflammatory Diseases Among Patients With Inflammatory Bowel Diseases in Denmark

    Publikation: Bidrag til tidsskriftTidsskriftartikelForskningpeer review

  • Johan Burisch
  • Javier P Gisbert
  • Britta Siegmund
  • Dominik Bettenworth
  • Sandra Bohn Thomsen
  • Isabelle Cleynen
  • Anneline Cremer
  • Nik John Sheng Ding
  • Federica Furfaro
  • Michail Galanopoulos
  • Philip Christian Grunert
  • Jurij Hanzel
  • Tamara Knezevic Ivanovski
  • Eduards Krustins
  • Nurulamin Noor
  • Neil O'Morain
  • Iago Rodríguez-Lago
  • Michael Scharl
  • Julia Tua
  • Mathieu Uzzan
  • Nuha Ali Yassin
  • Filip Baert
  • Ebbe Langholz
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Background: The "United Registries for Clinical Assessment and Research" (UR-CARE) database is an initiative of the European Crohn's and Colitis Organisation (ECCO) to facilitate daily patient care and research studies in inflammatory bowel disease (IBD). Herein, we sought to validate the database by using fictional case histories of patients with IBD that were to be entered by observers of varying experience in IBD.

Methods: A total of 19 observers entered 5 patient case histories into the database. After six weeks, all observers entered the same case histories again. For each case history, 20 key variables were selected to calculate the accuracy for each observer. We assumed that the database was such that ≥ 90% of the entered data would be correct. Overall proportion of correctly entered data was calculated using a beta-binomial regression model to account for inter-observer variation and compared to the expected level of validity. Re-test reliability was assessed using McNemar's test.

Results: For all case histories, the overall proportion of correctly entered items and their confidence intervals included the target of 90% [Case 1: 92% (88-94%); Case 2: 87% (83-91%); Case 3: 93% (90-95%); Case 4: 97% (94-99%); Case 5: 91% (87-93%)]. These numbers did not differ significantly from those found 6 weeks later (NcNemar's test p>0.05).

Conclusion: The UR-CARE database appears to be feasible, valid and reliable as a tool and easy to use regardless of prior user experience and level of clinical IBD experience. UR-CARE has the potential to enhance future European collaborations regarding clinical research in IBD.

OriginalsprogEngelsk
TidsskriftJournal of Crohn's & colitis
Vol/bind12
Udgave nummer5
Sider (fra-til)532-537
ISSN1873-9946
DOI
StatusUdgivet - 1 maj 2018

ID: 52668666