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.
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 IBDpatients 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.
Authors: Johan Burisch; Daniel Bergemalm; Jonas Halfvarson; Viktor Domislovic; Zeljko Krznaric; Adrian Goldis; Jens F Dahlerup; Pia Oksanen; Pekka Collin; Luisa de Castro; Vicent Hernandez; Svetlana Turcan; Elena Belousova; Renata D'Incà; Alessandro Sartini; Daniela Valpiani; Martina Giannotta; Ravi Misra; Naila Arebi; Dana Duricova; Martin Bortlik; Kelly Gatt; Pierre Ellul; Natalia Pedersen; Jens Kjeldsen; Karina W Andersen; Vibeke Andersen; Konstantinos H Katsanos; Dimitrios K Christodoulou; Shaji Sebastian; Luisa Barros; Fernando Magro; Jóngerð Mm Midjord; Kári R Nielsen; Riina Salupere; Hendrika Al Kievit; Gediminas Kiudelis; Juozas Kupčinskas; Mathurin Fumery; Corinne Gower-Rousseau; Ioannis P Kaimakliotis; Doron Schwartz; Selwyn Odes; Laszlo Lakatos; Peter L Lakatos; Ebbe Langholz; Pia Munkholm Journal: United European Gastroenterol J Date: 2020-07-26 Impact factor: 4.623
Authors: María Chaparro; Manuel Barreiro-de Acosta; José Manuel Benítez; José Luis Cabriada; María José Casanova; Daniel Ceballos; María Esteve; Hipólito Fernández; Daniel Ginard; Fernando Gomollón; Rufo Lorente; Pilar Nos; Sabino Riestra; Montserrat Rivero; Pilar Robledo; Cristina Rodríguez; Beatriz Sicilia; Emilio Torrella; Ana Garre; Esther García-Esquinas; Fernando Rodríguez-Artalejo; Javier P Gisbert Journal: Therap Adv Gastroenterol Date: 2019-05-21 Impact factor: 4.409
Authors: Ravi Misra; Jimmy Limdi; Rachel Cooney; Samia Sakuma; Matthew Brookes; Edward Fogden; Sanjeev Pattni; Naveen Sharma; Tariq Iqbal; Pia Munkholm; Johan Burisch; Naila Arebi Journal: World J Gastroenterol Date: 2019-10-28 Impact factor: 5.742