Copyright ©The Author(s) 2018. Published by Baishideng Publishing Group Inc. All rights reserved.
World J Gastroenterol. Mar 14, 2018; 24(10): 1063-1071
Published online Mar 14, 2018. doi: 10.3748/wjg.v24.i10.1063
Inflammatory bowel disease registries for collection of patient iron parameters in Europe
Jonas Halfvarson, Fraser Cummings, Olof Grip, Guillaume Savoye
Jonas Halfvarson, Department of Gastroenterology, Faculty of Medicine and Health, Örebro University, Örebro SE 70182, Sweden
Fraser Cummings, Department of Gastroenterology, Southampton University Hospital NHS Foundation Trust, Southampton, Hampshire SO16 6YD, United Kingdom
Olof Grip, Department of Gastroenterology, Skåne University Hospital, Malmö S-20502, Sweden
Guillaume Savoye, Service d'hépato-gastroentérologie, CHU de Rouen-Hôpital Charles Nicolle, Rouen 76031, France
Author contributions: All authors contributed equally to the conception and topics for this review and to revising the article critically for intellectual content; all authors approved the final version of the manuscript for submission.
Conflict-of-interest statement: Halfvarson J has received honoraria/grants from Abbvie, Celgene, Hospira, Janssen, Medivir, MSD, Pfizer, Sandoz, Takeda, Tillotts Pharma, and Vifor Pharma; Cummings F has received honoraria/grants from Biogen, Abbvie, Ferring, Hospira, Janssen, Pfizer, MSD, Napp, Pharmacosmos, Shield Therapeutics, Takeda, and Vifor Pharma; Grip O has received honoraria from Abbvie, Ferring, Janssen, Takeda, and Vifor Pharma; and Savoye G has received honoraria from HAC Pharma France, Pharmacosmos, and Vifor Pharma.
Open-Access: This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:
Correspondence to: Jonas Halfvarson, MD, PhD, Associate Professor, Department of Gastroenterology, Faculty of Medicine and Health, Örebro University, Örebro SE 70182, Sweden.
Telephone: +46-19-303000 Fax: +46-19-6021774
Received: December 14, 2017
Peer-review started: December 15, 2017
First decision: December 27, 2017
Revised: February 2, 2018
Accepted: February 9, 2018
Article in press: February 9, 2018
Published online: March 14, 2018

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, Iron deficiency, Registries, Inflammatory bowel disease, Patient care

Core tip: Despite its prevalence, iron deficiency is often overlooked in inflammatory bowel disease (IBD). More data are required to fully understand the epidemiology, treatment, and quality of care around iron deficiency in IBD. We suggest that IBD registries are ideally positioned to collect these data from routine clinical practice. We discuss the laboratory, clinical, and patient-reported data that could be collected, and review how best to incorporate collection of these data into existing registries.