Enhancing evidence based medicine: Twelve tips for conducting register-based research

Brooke, Hannah L.; Holzmann, Martin J.; Olén, Ola; Talbäck, Mats; Feychting, Maria; Berglund, Anita; Ludvigsson, Jonas F.; Ljung, Rickard

doi:10.15694/mep.2016.000071

Cited by 3 publications

(3 citation statements)

References 26 publications

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“…In this study, we retrieved medical data from Sweden's 28 Pathology Registers, the Patient Register [28,29], and the Prescribed Drug Register [30]. Follow-up including date of emigration and death was ascertained through the Total Population Register [31].…”

Section: Settingmentioning

confidence: 99%

Risk of fractures in individuals with eosinophilic esophagitis: nationwide population-based cohort study

et al. 2022

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Background and aims Eosinophilic esophagitis (EoE) is an emerging, chronic immune-mediated disease for which swallowed topical steroids and proton pump inhibitors (PPIs) represent first-line treatments. Immune-mediated diseases, steroids, and PPI use have been linked to osteoporosis. We assessed the risk of fractures in patients with EoE and determined whether the most commonly used treatments for EoE were associated with increased fracture risk. Methods We followed a nationwide cohort of 1263 individuals in Sweden with biopsy-verified EoE diagnosed between 2005 and 2016 for first-time fracture of any type. Age- and sex-matched reference individuals were retrieved from the Total Population Register (n = 5164). We estimated hazard ratios (HRs) for fracture in relation to EoE diagnosis, steroid exposure, and PPI use. In a separate analysis, we compared fracture risk among individuals with EoE to their siblings (n = 1394). Results During 4521 person-years of follow-up, 69 individuals with EoE experienced a first-time fracture (15.3/1000 person-years) compared with 234 reference individuals (12.6/1000 person-years). After adjusting for age, sex, birth year, and county of residence, EoE was not associated with a statistically significantly increased risk of fractures (HR = 1.2, 95% CI = 0.9–1.6). Among EoE individuals, exposure to PPIs and swallowed steroids did not modify the risk of fracture (p for heterogeneity 0.20 and 0.07 respectively). There was no increased risk of fractures in EoE compared to EoE-free siblings. Conclusion The risk of fracture in EoE was not statistically significantly elevated compared to non-EoE reference individuals. Fracture risk in EoE was not modified by PPIs or steroid use.

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Section: Settingmentioning

confidence: 99%

Risk of fractures in individuals with eosinophilic esophagitis: nationwide population-based cohort study

et al. 2022

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“…Some of the data-entry tools allow for the upload of laboratory data directly into the system, such that, after negotiations with the relevant providers, iron parameters could be added to the data collected with relative ease[ 13 ]. Similarly, the Swedish Quality Registry for Inflammatory Bowel Disease (SWIBREG) - which is notable in being well established and in covering half of the Swedish IBD population-can be linked to other national registers to evaluate etiology, prognosis, and outcomes of different treatment modalities[ 14 ].…”

Section: Existing Registriesmentioning

confidence: 99%

“…If there are restrictions on exporting personal data from the country, steps must be taken to anonymize and aggregate the information. It is also important to understand exactly what is of interest to a collaborating registry, and to identify and characterize all variables collected, as these may vary between registries[ 14 ].…”

Section: How Should Ida-related Data Be Collected In Ibd Registries?mentioning

confidence: 99%

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

Halfvarson¹,

Cummings²,

Grip³

et al. 2018

WJG

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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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Pre‐ and perinatal stress and irritable bowel syndrome in young adults – A nationwide register‐based cohort study

Olén

Stephansson

Bäckman

et al. 2018

Neurogastroenterology Motil

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Enhancing evidence based medicine: Twelve tips for conducting register-based research

Cited by 3 publications

References 26 publications

Risk of fractures in individuals with eosinophilic esophagitis: nationwide population-based cohort study

Risk of fractures in individuals with eosinophilic esophagitis: nationwide population-based cohort study

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

Pre‐ and perinatal stress and irritable bowel syndrome in young adults – A nationwide register‐based cohort study

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