Norsk pasientregister – en viktig kilde for forskning

Bakken, Inger Johanne; Surén, Pål; Håberg, Siri E.; Cappelen, Inger; Stoltenberg, Camilla

doi:10.4045/tidsskr.13.1417

Cited by 29 publications

(23 citation statements)

References 6 publications

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“…ITP patients are referred by their general practitioners to hospital-based hematological specialists. Hospitals are required to report data on all hospital visits to nationwide hospital registries [14], [15], [16]. Virtually complete follow-up for hospitalizations, outpatient clinic visits, and death among ITP patients is available through the countries´ nationwide hospital and population registries, linkable through the personal identification number (PIN) assigned to all residents of each country [17], [18].…”

Section: Methodsmentioning

confidence: 99%

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Chronic immune thrombocytopenia in Denmark, Sweden and Norway: The Nordic Country Patient Registry for Romiplostim

et al. 2019

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Background: Population-based cohorts of immune thrombocytopenia (ITP) are useful for understanding occurrence, clinical characteristics and long-term clinical course. This paper describes the content of the Nordic Country Patient Registry for Romiplostim (NCPRR) and provides prevalence and incidence estimates of chronic ITP (cITP). Methods: The NCPRR, a cohort study established in 2009, includes all adult (18 years) patients in Denmark, Sweden and Norway with cITP (defined as ITP lasting >12 months and platelet count <100 £ 10 9 /L), combining data from national health registries and medical records. The NCPRR currently includes prevalent cITP patients diagnosed before 2009 and incident cITP patients diagnosed during 2009À2016. The registry obtains clinical information for cITP patients, including comorbidities, treatments, laboratory values, and complete follow-up for various outcomes. Findings: The NCPRR currently includes 3831 patients with cITP (1258 prevalent; 2573 incident). In 2009, the prevalence of registered cITP was 10 ¢0/100,000 (95%CI:9 ¢1À11 ¢0) adult persons in Denmark and 10¢ 7/ 100,000 (95% CI: 9¢9À11 ¢4) adults in Sweden. During 2009À2016, the incidence rates of cITP per 100,000 person-years were 2¢8 (95%CI: 2¢6À3¢0), 1¢8 (95%CI: 1¢ 7À1¢9) and 2¢1 (95%CI: 1¢ 9À2¢2) in Denmark, Sweden and Norway, respectively. Fifty-eight percent of cITP patients were women. At NCPRR inclusion, 30.2% were aged 70 years, 23% had a platelet count < 50 £ 10 9 /L, 17.4% were splenectomized, 41% had prior ITP therapy, and 8.6% had severe comorbidity. Interpretation: The NCPRR provides population-based data on the epidemiology and characteristics of almost 4000 cITP patients and is a valuable resource for research. Funding: This study was partly funded by a research grant from Amgen to Aarhus University.

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Section: Methodsmentioning

confidence: 99%

“…The Norwegian Patient Registry, established in 1997, has included PINs since 2008 [15]. The Registry contains dates of hospital admission/discharge and outpatient contacts, diagnoses coded according to ICD-10, and major procedures performed.…”

Section: Methodsmentioning

confidence: 99%

Chronic immune thrombocytopenia in Denmark, Sweden and Norway: The Nordic Country Patient Registry for Romiplostim

et al. 2019

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“…Personal identification numbers have been reported to the NPR from 2008 onwards, making tracking of subjects possible for research purposes. Reporting of the personal identification number has been nearly complete from the start [ 9 ]. The personal identification number is stored in encrypted form in the NPR.…”

Section: Methodsmentioning

confidence: 99%

Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012

Bakken

Tveito

Gunnes

et al. 2014

BMC Med

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122

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BackgroundThe aim of the current study was to estimate sex- and age-specific incidence rates of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) using population-based registry data. CFS/ME is a debilitating condition with large impact on patients and their families. The etiology is unknown, and the distribution of the disease in the general population has not been well described.MethodsCases of CFS/ME were identified in the Norwegian Patient Register (NPR) for the years 2008 to 2012. The NPR is nationwide and contains diagnoses assigned by specialist health care services (hospitals and outpatient clinics). We estimated sex- and age-specific incidence rates by dividing the number of new cases of CFS/ME in each category by the number of person years at risk. Incidence rate ratios were estimated by Poisson regression with sex, age categories, and year of diagnosis as covariates.ResultsA total of 5,809 patients were registered with CFS/ME during 2008 to 2012. The overall incidence rate was 25.8 per 100,000 person years (95% confidence interval (CI): 25.2 to 26.5). The female to male incidence rate ratio of CFS/ME was 3.2 (95% CI: 3.0 to 3.4). The incidence rate varied strongly with age for both sexes, with a first peak in the age group 10 to 19 years and a second peak in the age group 30 to 39 years.ConclusionsEarly etiological clues can sometimes be gained from examination of disease patterns. The strong female preponderance and the two age peaks suggest that sex- and age-specific factors may modulate the risk of CFS/ME.

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“…We also saw an indication that automated data harvesting gave slightly better denominator data quality. It is, however, difficult to assess true completeness, representativeness and accuracy without having access to linked data [ 32 ]. Being able to compare surveillance data with administrative data on a regular basis, in order to give hospitals feedback on data quality, could be a useful tool in improving quality and instilling trust in the surveillance system performance.…”

Section: Discussionmentioning

confidence: 99%

The quality of denominator data in surgical site infection surveillance versus administrative data in Norway 2005–2010

et al. 2015

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BackgroundHigh quality of surveillance systems for surgical site infections (SSIs) is the key to their usefulness. The Norwegian Surveillance System for Antibiotic Consumption and Healthcare-Associated Infections (NOIS) was introduced by regulation in 2005, and is based largely on automated extraction of data from underlying systems in the hospitals.MethodsThis study investigates the quality of NOIS-SSI’s denominator data by evaluating completeness, representativeness and accuracy compared with de-identified administrative data for 2005–2010. Comparisons were made by region, hospital type and size, age and sex for 4 surgical procedures.ResultsThe completeness of NOIS improved from 29.2 % in 2005 to 79.8 % in 2010. NOIS-SSI became representative over time for most procedures by hospital size and type, but not by region. It was representative by age and sex for all years and procedures. Accuracy was good for all years and procedures by all explanatory variables.ConclusionsA flexible and incremental implementation strategy has encouraged the development of computer-based surveillance systems in the hospitals which gives good accuracy, but the same strategy has adversely affected the completeness and representativeness of the denominator data. For the purpose of evaluating risk factors and implementing prevention and precautionary measures in the individual hospitals, representativeness seems sufficient, but for benchmarking and/or public reporting it is not good enough.

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Norsk pasientregister – en viktig kilde for forskning

Cited by 29 publications

References 6 publications

Chronic immune thrombocytopenia in Denmark, Sweden and Norway: The Nordic Country Patient Registry for Romiplostim

Chronic immune thrombocytopenia in Denmark, Sweden and Norway: The Nordic Country Patient Registry for Romiplostim

Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012

The quality of denominator data in surgical site infection surveillance versus administrative data in Norway 2005–2010

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