Inflammatory bowel disease registries for collection of patient iron parameters in Europe

Table 1 Examples of active inflammatory bowel disease registries in Europe

Name	Country	Year established	Description and aim	IBD Study population	Data collected
Competence Network IBD Registry[27]	Germany	2015	Scientists, physicians, clinics, research institutes, and industry with an interest in research to improve the care of patients with IBD	Approximately 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]	Spain	2006	Promotion of clinical and genetic studies in IBD, epidemiology of IBD, clinical outcomes, and drug safety in IBD treatment	> 11000	Patient demographics, disease classification, treatment outcomes and safety, phenotype, and family history of IBD
EPIMAD[18,30-34]	Northern France	1988	To 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 IBD	All IBD patients in region (approximately 20000 patients)	Patient demographics and disease data
SWIBREG[35]	Sweden	2005	To 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]	Switzerland	2005	To build understanding of the consequences of IBD on the physical, mental, and social conditions of IBD patients	Voluntary national database of > 2500 patients	Patient 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 Kingdom	2013	To 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 research	Approximately 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 Germany	2004	Developed 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 1000	Patient demographics, disease and treatment data
SPIRIT-IBD[37]	Spain	1996	To understand the incidence and prevalence of IBD in pediatric patients	Approximately 2000	Patient demographics, disease and treatment data
EUROKIDS[38,39]	Europe and Israel	2004	To audit the diagnostic workup of pediatric IBD patients and to accurately describe disease in newly diagnosed pediatric IBD patients	Approximately 4000	Patient demographics, disease and treatment data

IBD: Inflammatory bowel disease; IDA: Iron deficiency anemia.