Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study
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Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study. / Burisch, Johan; Cukovic-Cavka, Silvija; Kaimakliotis, Ioannis; Shonová, Olga; Andersen, Vibeke; Dahlerup, Jens F; Elkjaer, Margarita; Langholz, Ebbe; Pedersen, Natalia; Salupere, Riina; Kolho, Kaija-Leena; Manninen, Pia; Lakatos, Peter Laszlo; Shuhaibar, Mary; Odes, Selwyn; Martinato, Matteo; Mihu, Ion; Magro, Fernando; Belousova, Elena; Fernandez, Alberto; Almer, Sven; Halfvarson, Jonas; Hart, Ailsa; Munkholm, Pia.
I: Journal of Crohn's & colitis, Bind 5, Nr. 4, 08.2011, s. 342-9.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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TY - JOUR
T1 - Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study
AU - Burisch, Johan
AU - Cukovic-Cavka, Silvija
AU - Kaimakliotis, Ioannis
AU - Shonová, Olga
AU - Andersen, Vibeke
AU - Dahlerup, Jens F
AU - Elkjaer, Margarita
AU - Langholz, Ebbe
AU - Pedersen, Natalia
AU - Salupere, Riina
AU - Kolho, Kaija-Leena
AU - Manninen, Pia
AU - Lakatos, Peter Laszlo
AU - Shuhaibar, Mary
AU - Odes, Selwyn
AU - Martinato, Matteo
AU - Mihu, Ion
AU - Magro, Fernando
AU - Belousova, Elena
AU - Fernandez, Alberto
AU - Almer, Sven
AU - Halfvarson, Jonas
AU - Hart, Ailsa
AU - Munkholm, Pia
N1 - Copyright © 2011 European Crohn's and Colitis Organisation. All rights reserved.
PY - 2011/8
Y1 - 2011/8
N2 - BACKGROUND: The EpiCom-study investigates a possible East-West-gradient in Europe in the incidence of IBD and the association with environmental factors. A secured web-based database is used to facilitate and centralize data registration.AIM: To construct and validate a web-based inception cohort database available in both English and Russian language.METHOD: The EpiCom database has been constructed in collaboration with all 34 participating centers. The database was translated into Russian using forward translation, patient questionnaires were translated by simplified forward-backward translation. Data insertion implies fulfillment of international diagnostic criteria, disease activity, medical therapy, quality of life, work productivity and activity impairment, outcome of pregnancy, surgery, cancer and death. Data is secured by the WinLog3 System, developed in cooperation with the Danish Data Protection Agency. Validation of the database has been performed in two consecutive rounds, each followed by corrections in accordance with comments.RESULTS: The EpiCom database fulfills the requirements of the participating countries' local data security agencies by being stored at a single location. The database was found overall to be "good" or "very good" by 81% of the participants after the second validation round and the general applicability of the database was evaluated as "good" or "very good" by 77%. In the inclusion period January 1st -December 31st 2010 1336 IBD patients have been included in the database.CONCLUSION: A user-friendly, tailor-made and secure web-based inception cohort database has been successfully constructed, facilitating remote data input. The incidence of IBD in 23 European countries can be found at www.epicom-ecco.eu.
AB - BACKGROUND: The EpiCom-study investigates a possible East-West-gradient in Europe in the incidence of IBD and the association with environmental factors. A secured web-based database is used to facilitate and centralize data registration.AIM: To construct and validate a web-based inception cohort database available in both English and Russian language.METHOD: The EpiCom database has been constructed in collaboration with all 34 participating centers. The database was translated into Russian using forward translation, patient questionnaires were translated by simplified forward-backward translation. Data insertion implies fulfillment of international diagnostic criteria, disease activity, medical therapy, quality of life, work productivity and activity impairment, outcome of pregnancy, surgery, cancer and death. Data is secured by the WinLog3 System, developed in cooperation with the Danish Data Protection Agency. Validation of the database has been performed in two consecutive rounds, each followed by corrections in accordance with comments.RESULTS: The EpiCom database fulfills the requirements of the participating countries' local data security agencies by being stored at a single location. The database was found overall to be "good" or "very good" by 81% of the participants after the second validation round and the general applicability of the database was evaluated as "good" or "very good" by 77%. In the inclusion period January 1st -December 31st 2010 1336 IBD patients have been included in the database.CONCLUSION: A user-friendly, tailor-made and secure web-based inception cohort database has been successfully constructed, facilitating remote data input. The incidence of IBD in 23 European countries can be found at www.epicom-ecco.eu.
KW - Database Management Systems
KW - Databases, Factual/economics
KW - Europe/epidemiology
KW - Humans
KW - Inflammatory Bowel Diseases/epidemiology
KW - Translating
U2 - 10.1016/j.crohns.2011.02.016
DO - 10.1016/j.crohns.2011.02.016
M3 - Journal article
C2 - 21683305
VL - 5
SP - 342
EP - 349
JO - Journal of Crohn's and Colitis
JF - Journal of Crohn's and Colitis
SN - 1873-9946
IS - 4
ER -
ID: 219528730