Service Communautaire d'Information sur la Recherche et le Développement - CORDIS

Internet-based data inclusion in a population-based European collaborative study of IBD

To describe an Internet-based data acquisition facility for a European 10-year clinical follow-up study project of a population-based cohort of IBD patients and to investigate the influence of demographic and disease related patient characteristics on response rates.

Materials and methods:
Thirteen years ago, the European Collaborative study group on IBD (EC-IBD) initiated a population based prospective inception cohort of 2201 uniformly diagnosed Inflammatory Bowel Disease (IBD) patients within twenty well-described geographical areas in twelve European countries and Israel. For the ten-year follow-up of this cohort, an electronic Patient Questionnaire (ePQ) and electronic Physician per Patient Follow-up form (ePpPFU) were designed as two separate data collecting instruments and made available through an Internet based website.

Independent demographic and clinical determinants of ePQ participation were analyzed using multivariate logistic regression.

In 958 (316 CD and 642 UC) out of a total number of 1505 [64%] available IBD patients, originating from thirteen participating centres from nine different countries, both ePQ and ePpPFU were completed. Patients older than 40 years at ePQ completion (Odds Ratio: 1.53 (95% Confidence Interval: 1.14-2.05)) and those with active disease during the three months previous to ePQ completion (Odds Ratio: 3.32 (95 % Confidence Interval: 1.57-7.03)) were significantly more likely to respond.

An Internet based data acquisition tool appeared successful in sustaining a unique Western-European and Israelian multi-centre 10-year clinical follow-up study project in patients afflicted with IBD.

Reported by

Dept of Gastroenterology, University Hospital Maastricht
Debyelaan 25
6202 AZ Maastricht
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