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

Research output: Contribution to journalReview article


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.


  • Jonas Halfvarson
  • Fraser Cummings
  • Olof Grip
  • Guillaume Savoye
External organisations
  • Örebro University
  • Skåne University Hospital
  • Hopital Charles Nicolle
  • University Hospital Southampton
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Gastroenterology and Hepatology


  • Anemia, Inflammatory bowel disease, Iron deficiency, Patient care, Registries
Original languageEnglish
Pages (from-to)1063-1071
Number of pages9
JournalWorld Journal of Gastroenterology
Issue number10
Publication statusPublished - 2018 Mar 14
Publication categoryResearch
Externally publishedYes