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Inflammatory bowel disease registries for collection of patient iron parameters in Europe
Örebro University, School of Medical Sciences. Department of Gastroenterology, Faculty of Health and Medical Sciences, Örebro University, Örebro, Sweden.ORCID iD: 0000-0003-0122-7234
Department of Gastroenterology, Southampton University Hospital NHS Foundation Trust, Southampton, Hampshire, United Kingdom.
Department of Gastroenterology, Skåne University Hospital, Malmö, Sweden.
Service d'Hépato-Gastroentérologie, CHU de Rouen-Hôpital Charles Nicolle, Rouen, France.
2018 (English)In: World Journal of Gastroenterology, ISSN 1007-9327, E-ISSN 2219-2840, Vol. 24, no 10, p. 1063-1071Article, review/survey (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Baishideng Publishing Group , 2018. Vol. 24, no 10, p. 1063-1071
Keywords [en]
Anemia, Iron deficiency, Registries, Inflammatory bowel disease, Patient care
National Category
Gastroenterology and Hepatology
Identifiers
URN: urn:nbn:se:oru:diva-66264DOI: 10.3748/wjg.v24.i10.1063ISI: 000427449300001PubMedID: 29563751Scopus ID: 2-s2.0-85043681547OAI: oai:DiVA.org:oru-66264DiVA, id: diva2:1194486
Note

Funding Agency:

Vifor Pharma

Available from: 2018-04-03 Created: 2018-04-03 Last updated: 2018-08-20Bibliographically approved

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Halfvarson, Jonas

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