Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study

Johan Burisch; Silvija Cukovic-Cavka; Ioannis Kaimakliotis; Olga Shonová; Vibeke Andersen; Jens F Dahlerup; Margarita Elkjaer; Ebbe Langholz; Natalia Pedersen; Riina Salupere; Kaija-Leena Kolho; Pia Manninen; Peter Laszlo Lakatos; Mary Shuhaibar; Selwyn Odes; Matteo Martinato; Ion Mihu; Fernando Magro; Elena Belousova; Alberto Fernandez; Sven Almer; Jonas Halfvarson; Ailsa Hart; Pia Munkholm

doi:10.1016/j.crohns.2011.02.016

Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study

Johan Burisch, Silvija Cukovic-Cavka, Ioannis Kaimakliotis, Olga Shonová, Vibeke Andersen, Jens F Dahlerup, Margarita Elkjaer, Ebbe Langholz, Natalia Pedersen, Riina Salupere, Kaija-Leena Kolho, Pia Manninen, Peter Laszlo Lakatos, Mary Shuhaibar, Selwyn Odes, Matteo Martinato, Ion Mihu, Fernando Magro, Elena Belousova, Alberto FernandezSven Almer, Jonas Halfvarson, Ailsa Hart, Pia Munkholm

28 Citationer (Scopus)

Abstract

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.

Originalsprog	Engelsk
Tidsskrift	Journal of Crohn's & colitis
Vol/bind	5
Udgave nummer	4
Sider (fra-til)	342-9
Antal sider	8
ISSN	1873-9946
DOI	https://doi.org/10.1016/j.crohns.2011.02.016
Status	Udgivet - sep. 2011

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Burisch, J., Cukovic-Cavka, S., Kaimakliotis, I., Shonová, O., Andersen, V., Dahlerup, J. F., Elkjaer, M., Langholz, E., Pedersen, N., Salupere, R., Kolho, K-L., Manninen, P., Lakatos, P. L., Shuhaibar, M., Odes, S., Martinato, M., Mihu, I., Magro, F., Belousova, E., ... Munkholm, P. (2011). Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study. Journal of Crohn's & colitis, 5(4), 342-9. https://doi.org/10.1016/j.crohns.2011.02.016

Burisch, J, Cukovic-Cavka, S, Kaimakliotis, I, Shonová, O, Andersen, V, Dahlerup, JF, Elkjaer, M, Langholz, E, Pedersen, N, Salupere, R, Kolho, K-L, Manninen, P, Lakatos, PL, Shuhaibar, M, Odes, S, Martinato, M, Mihu, I, Magro, F, Belousova, E, Fernandez, A, Almer, S, Halfvarson, J, Hart, A & Munkholm, P 2011, 'Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study', Journal of Crohn's & colitis, bind 5, nr. 4, s. 342-9. https://doi.org/10.1016/j.crohns.2011.02.016

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abstract = "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.",

keywords = "Database Management Systems, Databases, Factual/economics, Europe/epidemiology, Humans, Inflammatory Bowel Diseases/epidemiology, Translating",

author = "Johan Burisch and Silvija Cukovic-Cavka and Ioannis Kaimakliotis and Olga Shonov{\'a} and Vibeke Andersen and Dahlerup, {Jens F} and Margarita Elkjaer and Ebbe Langholz and Natalia Pedersen and Riina Salupere and Kaija-Leena Kolho and Pia Manninen and Lakatos, {Peter Laszlo} and Mary Shuhaibar and Selwyn Odes and Matteo Martinato and Ion Mihu and Fernando Magro and Elena Belousova and Alberto Fernandez and Sven Almer and Jonas Halfvarson and Ailsa Hart and Pia Munkholm",

year = "2011",

month = sep,

doi = "10.1016/j.crohns.2011.02.016",

language = "English",

volume = "5",

pages = "342--9",

journal = "Journal of Crohn's and Colitis",

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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

PY - 2011/9

Y1 - 2011/9

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

SN - 1873-9946

VL - 5

SP - 342

EP - 349

JO - Journal of Crohn's and Colitis

JF - Journal of Crohn's and Colitis

IS - 4

ER -

Construction and validation of a web-based epidemiological database for inflammatory bowel diseases in Europe An EpiCom study

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