Browsing by Author "Kariniemi, Maria"

Background: The Finnish registry for Inflammatory Bowel Diseases (IBDs) was established in 2016. Currently it covers approximately 25 % of IBD patients in Finland. Aim: To review the Finnish IBD registry, compare it to existing IBD registries and to evaluate the reliability of the registry in clinical and research settings. Methods: A cohort of 921 patients was selected to evaluate the feasibility of the registry in research use. The cohort was analyzed to determine the relationship between clinical activity and fecal calprotectin (fCal), a surrogate biomarker of inflammation in the gut. Results: The strengths of the Finnish IBD registry include automatic transfer of parameters from electronic health records to the registry, possibility to use in daily clinical practice, and various parameters which can be utilized in quality control and research. However, there are several challenges for the future, notably the inaccuracy of data in registry parameters, most prominently in medications. In our cohort study, most patients had good disease control based on symptoms and fCal, including patients on either conventional or advanced therapies. Moreover, patients with a high fCal (≥ 100 µg/g) had significantly (p < 0.001) worse symptom control than those with a normal fCal (< 100 µg/g). This indicates the symptom questionnaire used was suggestive of disease activity in our cohort.