Copyright ©The Author(s) 2018.
World J Gastroenterol. Mar 14, 2018; 24(10): 1063-1071
Published online Mar 14, 2018. doi: 10.3748/wjg.v24.i10.1063
Table 1 Examples of active inflammatory bowel disease registries in Europe
NameCountryYear establishedDescription and aimIBD Study populationData collected
Competence Network IBD Registry[27]Germany2015Scientists, physicians, clinics, research institutes, and industry with an interest in research to improve the care of patients with IBDApproximately 50000 (anticipated)IBD frequency and course; comorbidity incidence; efficacy of treatment; predictive parameters; subgroup characterization; outpatient vs inpatient costing; guideline implementation; service delivery
ENEIDA[28,29]Spain2006Promotion of clinical and genetic studies in IBD, epidemiology of IBD, clinical outcomes, and drug safety in IBD treatment> 11000Patient demographics, disease classification, treatment outcomes and safety, phenotype, and family history of IBD
EPIMAD[18,30-34]Northern France1988To provide reliable data on the epidemiology of IBD to healthcare authorities, provide data to search for a cause of disease, and describe in a population-based setting the natural history and real-life management of IBDAll IBD patients in region (approximately 20000 patients)Patient demographics and disease data
SWIBREG[35]Sweden2005To serve as a decision support tool in everyday life, assessing disease activity and quality of life> 40000 (adult and pediatric)Patient demographics and disease data, drug history, treatment and disease outcomes, surgical interventions, patient-reported outcomes. Capacity to enter information about comorbidities
SIBDC[12]Switzerland2005To build understanding of the consequences of IBD on the physical, mental, and social conditions of IBD patientsVoluntary national database of > 2500 patientsPatient demographics, disease and treatment information. Patient blood samples are kept in a biobank providing a databank of genetic and disease information
UK IBD Registry[13]United Kingdom2013To drive improvement in patient care and access to care across the United Kingdom, inform commissioning and service design, improve understanding of long, term outcomes in IBD, provide local, regional, and national data in order to better define the pattern of ulcerative colitis and Crohn’s disease, and support IBD researchApproximately 20000 (adult and pediatric)Patient demographics, disease data, any surgical interventions, drug history, treatment and disease outcomes, disease activity scores and patient-reported outcomes
Pediatric registries
CEDATA[36]Austria and Germany2004Developed and operated by the working group of chronic inflammatory bowel diseases of the Society for Pediatric Gastroenterology and Nutrition; aims to improve the care of children and adolescents with IBD.Approximately 1000Patient demographics, disease and treatment data
SPIRIT-IBD[37]Spain1996To understand the incidence and prevalence of IBD in pediatric patientsApproximately 2000Patient demographics, disease and treatment data
EUROKIDS[38,39]Europe and Israel2004To audit the diagnostic workup of pediatric IBD patients and to accurately describe disease in newly diagnosed pediatric IBD patientsApproximately 4000Patient demographics, disease and treatment data
Table 2 Suggested iron deficiency anemia-related parameters to collect in an inflammatory bowel disease registry
Laboratory measurements
Hemoglobin level
Serum ferritin level
Transferrin saturation level
Soluble transferrin receptor level
Mean corpuscular volume
Mean corpuscular hemoglobin
C-reactive protein level
Clinical observations
Identification of ID/IDA-related symptoms
Duration of possible ID/IDA-related symptoms
Number of, duration of, and reasons for healthcare visits
Medication usage
Patient-reported outcomes
Quality-of-life questionnaires
Fatigue questionnaires
Work productivity and activity questionnaires
Treatment decisions
Iron supplement (oral or IV)
IBD medication
Surgical procedures