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

Abstract

Iron deficiency without anemia and iron deficiency anemia are common and frequently overlooked complications of inflammatory bowel disease. Despite the frequency and impact of iron deficiency in inflammatory bowel disease, there are gaps in our understanding about its incidence, prevalence and natural history and, consequently, patients may be undertreated. Medical registries have a key role in collecting data on the disease's natural history, the safety and effectiveness of drugs in routine clinical practice, and the quality of care delivered by healthcare services. Even though iron deficiency impacts inflammatory bowel disease patients and healthcare systems substantially, none of the established European inflammatory bowel disease registries systematically collects information on iron parameters and related outcomes. Collection of robust iron parameter data from patient registries is one way to heighten awareness about the importance of iron deficiency in this disease and to generate data to improve the quality of patient care, patient outcomes, and thus quality of life. This objective could be achieved through collection of specific laboratory, clinical, and patient-reported measurements that could be incorporated into existing registries. This review describes the status of current European inflammatory bowel disease registries and the data they generate, in order to highlight their potential role in collecting iron data, to discuss how such information gathering could contribute to our understanding of iron deficiency anemia, and to provide practical information in regard to the incorporation of accumulated iron parameter data into registries.

Keywords: Anemia; Inflammatory bowel disease; Iron deficiency; Patient care; Registries.

Figure 1

Data recorded at the point of care on an electronic system can be used to achieve a wide range of local and national objectives.

Figure 2

Collection and flow of data between existing healthcare registries to support various outcomes for multiple stakeholders. Solid line: flow of patient-level data; dashed line: flow of pseudo-anonymized data; dash-dot line: flow of aggregated anonymized data; block arrows, overall and relationships between implications. IBD: Inflammatory bowel disease; IDA: Iron deficiency anemia.