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

Halfvarson, Jonas; Cummings, Fraser; Grip, Olof LU and Savoye, Guillaume (2018) In World Journal of Gastroenterology 24(10). p.1063-1071
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... (More)

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.

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author
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Anemia, Inflammatory bowel disease, Iron deficiency, Patient care, Registries
in
World Journal of Gastroenterology
volume
24
issue
10
pages
9 pages
publisher
WJG Press
external identifiers
  • scopus:85043681547
ISSN
1007-9327
DOI
10.3748/wjg.v24.i10.1063
language
English
LU publication?
no
id
8fc5b554-86c3-4116-a82e-886b07afd867
date added to LUP
2018-03-29 09:56:49
date last changed
2019-02-20 11:12:22
@article{8fc5b554-86c3-4116-a82e-886b07afd867,
  abstract     = {<p>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.</p>},
  author       = {Halfvarson, Jonas and Cummings, Fraser and Grip, Olof and Savoye, Guillaume},
  issn         = {1007-9327},
  keyword      = {Anemia,Inflammatory bowel disease,Iron deficiency,Patient care,Registries},
  language     = {eng},
  month        = {03},
  number       = {10},
  pages        = {1063--1071},
  publisher    = {WJG Press},
  series       = {World Journal of Gastroenterology},
  title        = {Inflammatory bowel disease registries for collection of patient iron parameters in Europe},
  url          = {http://dx.doi.org/10.3748/wjg.v24.i10.1063},
  volume       = {24},
  year         = {2018},
}