Epilepsy-Related Mortality in Children and Young Adults in Denmark: A Nationwide Cohort Study

Neurology ◽  
2021 ◽  
pp. 10.1212/WNL.0000000000013068
Author(s):  
Marius Kløvgaard ◽  
Thomas Hadberg Lynge ◽  
Ioannis Tsiropoulos ◽  
Peter Vilhelm Uldall ◽  
Jytte Banner ◽  
...  
Keyword(s):  
Cause Of Death ◽  
Premature Mortality ◽  
Population Based ◽  
Hazard Ratio ◽  
Systematic Classification ◽  
Background Population ◽  
National Patient ◽  
Underlying Causes ◽  
Children And Young Adults ◽  
Related Mortality

Background and Objectives:Mortality is increased in epilepsy, but the important issue is that a proportion of epilepsy-related death is potentially preventable by optimized therapy and needs therefore to be identified. A new systematic classification of epilepsy-related mortality has been suggested by Devinsky et al. in 2016 to identify these preventable deaths. We applied this classification to an analysis of premature mortality in persons with epilepsy younger than 50 years.Methods:The study was a population-based retrospective cohort of all Danish citizens with and without epilepsy aged 1–49 years during 2007–2009. Information on all deaths was retrieved from the Danish Cause of Death Registry, autopsy reports, death certificates, and the Danish National Patient Registry. The primary cause of death in persons with epilepsy was evaluated independently by three neurologist, one neuro-pediatrician, and two cardiologists. In case of uncertainty a pathologist was consulted. All deaths were classified as either epilepsy- or not-epilepsy-related, and the underlying causes or modes of death were compared between persons with and without epilepsy.Results:During the study period 700 deaths were identified in persons with epilepsy, and 440 (62.9%) of these were epilepsy-related, hereof, 169 (38%) directly related to seizures and 181 (41%) due to an underlying neurological disease. SUDEP accounted for 80% of deaths directly related to epilepsy. Aspiration pneumonia was the cause of death in 80% of cases indirectly related to epilepsy.Compared with the background population, persons with epilepsy had a nearly four-fold increased all-cause mortality (adjusted mortality hazard ratio of 3.95 [95% CI 3.64–4.27], p<0.0001) and a higher risk of dying from various underlying causes including alcohol-related conditions (hazard ratio of 2.91 [95% CI 2.23–3.80], p<0.0001) and suicide (hazard ratio of 2.10 [95% CI 1.18–3.73], p=0.01).Discussion:The newly proposed classification for mortality in persons with epilepsy was useful in an unselected nationwide cohort. It helped classifying unnatural causes of death as epilepsy-related or not, and it helped identifying potentially preventable deaths. The leading causes of premature mortality in persons younger than 50 years were related to epilepsy and were thus potentially preventable by good seizure control.

scholarly journals Do Death Certificates Underestimate the Burden of Rare Diseases? The Example of Systemic Lupus Erythematosus Mortality, Sweden, 2001-2013

2018 ◽  
Vol 133 (4) ◽  
pp. 481-488 ◽  
Author(s):  
Titilola Falasinnu ◽  
Marios Rossides ◽  
Yashaar Chaichian ◽  
Julia F. Simard
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Cause Of Death ◽  
Rare Diseases ◽  
Lupus Erythematosus ◽  
Health Resources ◽  
Premature Mortality ◽  
Population Based ◽  
Mortality Data ◽  
Systemic Lupus ◽  
Swedish Population

Objectives: Mortality due to rare diseases, which are substantial sources of premature mortality, is underreported in mortality studies. The objective of this study was to determine the completeness of reporting systemic lupus erythematosus (SLE) as a cause of death. Methods: In 2017, we linked data on a Swedish population-based cohort (the Swedish Lupus Linkage, 2001-2013) comprising people with SLE (n = 8560) and their matched general population comparators (n = 37 717) to data from the Cause of Death Register. We reviewed death records of deceased people from the cohort (n = 5110) and extracted data on patient demographic characteristics and causes of death. We estimated odds ratios (ORs) and 95% confidence intervals (CIs) for not reporting SLE as a cause of death by using multivariable-adjusted logistic regression models. Results: Of 1802 deaths among SLE patients in the study, 1071 (59%) did not have SLE reported on their death records. Most SLE decedents were aged 75-84 at death (n = 584, 32%), female (n = 1462, 81%), and born in Nordic countries (n = 1730, 96%). Decedents aged ≥85 at death were more likely to have SLE not reported on their death records than were decedents aged <50 (OR = 2.34; 95% CI, 1.48-3.68). Having renal failure listed as a cause of death decreased the likelihood of SLE not being reported on the death record (OR = 0.54; 95% CI, 0.40-0.73), whereas having cancer listed as a cause of death increased this likelihood (OR = 2.39; 95% CI, 1.85-3.07). Conclusions: SLE was greatly underreported as a cause of mortality on death records of SLE patients, particularly in older decedents and those with cancer, thereby underestimating the true burden of this disease. Public health resources need to focus on improving the recording of rare diseases in order to enhance the epidemiological utility of mortality data.

A study of feasibility for setting up a dedicated brain tumor registry

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 12514-12514
Author(s):  
S. J. Davidson ◽  
K. O’Neal ◽  
J. van Dellen ◽  
F. Roncaroli ◽  
C. Brock ◽  
...  
Keyword(s):  
Cause Of Death ◽  
Operative Treatment ◽  
Population Based ◽  
Low Grade ◽  
Who Grade ◽  
Treatment Protocols ◽  
Presenting Symptoms ◽  
Background Population ◽  
Extent Of Surgery ◽  
Minimum Dataset

12514 Background: Population-based tumor registries represent an invaluable resource for monitoring incidence and prevalence of cancer. Nevertheless, data generated is not always useful for deciding treatment protocols or running translational/clinical research. This is particularly true for rare cancers such as primary brain tumors. Moreover, benign or low grade tumors are usually excluded and information such as quality of life and efficacy of treatment not followed up. Finally, there is no agreement on the minimum dataset required. Here, we investigated the difficulties of setting up a dedicated BTR that can be supportive of research. Methods: We audited 1000 consecutive histologically proven adult cases operated between 1995–2005. This group included 734 gliomas, 246 meningiomas and 20 ependymomas. As minimum dataset, we considered demographics, presenting symptoms, site, neuroimaging findings, pathology/WHO grade, extent of surgery, post-operative treatment, relapses and cause of death. To avoid capture/recapture errors we cross-referenced four independent databases (histopathology, imaging, Cancer Specialist and hospital patient database). Results: Overall availability of data was 80% in 1995–2000 and 95% in 2000–2005 when electronic notes were introduced. Missing data were as follow: demographics: 0%; symptoms: 20%; site and neuroimaging 15%; incorrect diagnosis or grade update; 20%; extent of surgery: 5%; post-operative treatment: 15%; follow-up: 10%: cause of death: 15%. Data could not be interpreted in 20% of cases due to transcription errors and use of abbreviations. Conclusion: To fulfil requirements for clinical/translational research (GNOSIS), BTR needs i) dedicated national registries; ii) specialist and professional data collection; iii) registration at the time of pathological diagnosis. No significant financial relationships to disclose.

scholarly journals Increased Incidence of Atrial Fibrillation in Patients with Rheumatoid Arthritis

2015 ◽  
Vol 2015 ◽  
pp. 1-5 ◽  
Author(s):  
A. Kirstin Bacani ◽  
Cynthia S. Crowson ◽  
Véronique L. Roger ◽  
Sherine E. Gabriel ◽  
Eric L. Matteson
Keyword(s):  
Rheumatoid Arthritis ◽  
Atrial Fibrillation ◽  
Population Based ◽  
Hazard Ratio ◽  
Olmsted County ◽  
Inception Cohort ◽  
Differential Impact ◽  
Record Review ◽  
Related Mortality

Objective. To investigate the incidence of atrial fibrillation (AF) among patients with rheumatoid arthritis (RA) compared to the general population.Methods. A population-based inception cohort of Olmsted County, Minnesota, residents with incident RA in 1980–2007 and a cohort of non-RA subjects from the same population base were assembled and followed until 12/31/2008. The occurrence of AF was ascertained by medical record review.Results. The study included 813 patients with RA and 813 non-RA subjects (mean age 55.9 (SD:15.7) years, 68% women in both cohorts). The prevalence of AF was similar in the RA and non-RA cohorts at RA incidence/index date (4% versus 3%;P=0.51). The cumulative incidence of AF during follow-up was higher among patients with RA compared to non-RA subjects (18.3% versus 16.3% at 20 years;P=0.048). This difference persisted after adjustment for age, sex, calendar year, smoking, and hypertension (hazard ratio: 1.46; 95% CI: 1.07, 2.00). There was no evidence of a differential impact of AF on mortality in patients with RA compared to non-RA subjects (hazard ratio 2.5 versus 2.8; interactionP=0.31).Conclusion. The incidence of AF is increased in patients with RA, even after adjustment for AF risk factors. AF related mortality risk did not differ between patients with and without RA.

scholarly journals Asthma and all-cause mortality in children and young adults: a population-based study

Thorax ◽  
2020 ◽  
Vol 75 (12) ◽  
pp. 1040-1046
Author(s):  
Emma Caffrey Osvald ◽  
Hannah Bower ◽  
Cecilia Lundholm ◽  
Henrik Larsson ◽  
Bronwyn K Brew ◽  
...  
Keyword(s):  
Young Adults ◽  
Proportional Hazards ◽  
Population Based ◽  
Cox Proportional Hazards ◽  
Interaction Terms ◽  
Drug Register ◽  
All Cause Mortality ◽  
National Patient ◽  
Children And Young Adults ◽  
Limiting Condition

BackgroundStudies suggest an increased all-cause mortality among adults with asthma. We aimed to study the relationship between asthma in children and young adults and all-cause mortality, and investigate differences in mortality rate by also having a life-limiting condition (LLC) or by parental socioeconomic status (SES).MethodsIncluded in this register-based study are 2 775 430 individuals born in Sweden between January 1986 and December 2012. We identified asthma cases using the National Patient Register (NPR) and the Prescribed Drug Register. Those with LLC were identified using the NPR. Parental SES at birth (income and education) was retrieved from Statistics Sweden. We estimated the association between asthma and all-cause mortality using a Cox proportional hazards regression model. Effect modification by LLC or parental SES was studied using interaction terms in the adjusted model.ResultsThe adjusted hazard rate (adjHR) for all-cause mortality in asthma cases versus non-asthma cases was 1.46 (95% CI 1.33 to 1.62). The highest increased rate appeared to be for those aged 5–15 years. In persons with asthma and without LLC, the adjHR remained increased at 1.33 (95% CI 1.18 to 1.50), but differed (p=0.002) from those with asthma and LLC, with an adjHR of 1.87 (95% CI 1.57 to 2.22). Parental SES did not alter the association (income, p=0.55; education, p=0.83).ConclusionThis study shows that asthma is associated with an increased mortality in children and young adults regardless of LLC or parental SES. Further research is warranted to investigate the possible mechanisms for this association.

Sickle Cell Disease Mortality in California and Georgia 2004-2008

Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 439-439
Author(s):  
Susan Paulukonis ◽  
Todd Griffin ◽  
Mei Zhou ◽  
James R. Eckman ◽  
Robert Hagar ◽  
...  
Keyword(s):  
African American ◽  
Cause Of Death ◽  
Sickle Cell ◽  
Causes Of Death ◽  
Mortality Rates ◽  
Population Based ◽  
Age Group ◽  
Death Certificates ◽  
Underlying Causes ◽  
Underlying Cause Of Death

Abstract On-going public health surveillance efforts in sickle cell disease (SCD) are critical for understanding the course and outcomes of this disease over time. Once nearly universally fatal by adolescence, many patients are living well into adulthood and sometimes into retirement years. Previous SCD mortality estimates have relied on data from death certificates alone or from deaths of patients receiving care in high volume hematology clinics, resulting in gaps in reporting and potentially biased conclusions. The Registry and Surveillance System for Hemoglobinopathies (RuSH) project collected and linked population-based surveillance data on SCD in California and Georgia from a variety of sources for years 2004-2008. These data sources included administrative records, newborn screening reports and health insurance claims as well as case reports of adult and pediatric patients receiving care in the following large specialty treatment centers: Georgia Comprehensive Sickle Cell Center, Georgia Regents University, Georgia Comprehensive Sickle Cell Center at Grady Health Systems and Children's Healthcare of Atlanta in Georgia, and Children's Hospital Los Angeles and UCSF Benioff Children's Hospital Oakland in California. Cases identified from these combined data sources were linked to death certificates in CA and GA for the same years. Among 12,143 identified SCD cases, 640 were linked to death certificates. Combined SCD mortality rates by age group at time of death are compared to combined mortality rates for all African Americans living in CA and GA. (Figure 1). SCD death rates among children up to age 14 and among adults 65 and older were very similar to those of the overall African American population. In contrast, death rates from young adulthood to midlife were substantially higher in the SCD population. Overall, only 55% of death certificates linked to the SCD cases had SCD listed in any of the cause of death fields. Thirty-four percent (CA) and 37% (GA) had SCD as the underlying cause of death. An additional 22% and 20% (CA and GA, respectively) had underlying causes of death that were not unexpected for SCD patients, including related infections such as septicemia, pulmonary/cardiac causes of death, renal failure and stroke. The remaining 44% (CA) and 43% (GA) had underlying causes of death that were either not related to SCD (e.g., malignancies, trauma) or too vague to be associated with SCD (e.g., generalized pulmonary or cardiac causes of death. Figure 2 shows the number of deaths by state, age group at death and whether the underlying cause of death was SCD specific, potentially related to SCD or not clearly related to SCD. While the number of deaths was too small to use for life expectancy calculations, there were more deaths over age 40 than under age 40 during this five year period. This effort represents a novel, population-based approach to examine mortality in SCD patients. These data suggest that the use of death certificates alone to identify deceased cases may not capture all-cause mortality among all SCD patients. Additional years of surveillance are needed to provide better estimates of current life expectancy and the ability to track and monitor changes in mortality over time. On-going surveillance of the SCD population is required to monitor changes in mortality and other outcomes in response to changes in treatments, standards of care and healthcare policy and inform advocacy efforts. This work was supported by the US Centers for Disease Control and Prevention and the National Heart, Lung and Blood Institute, cooperative agreement numbers U50DD000568 and U50DD001008. Figure 1: SCD-Specific & Overall African American Mortality Rates in CA and GA, 2004 – 2008. Figure 1:. SCD-Specific & Overall African American Mortality Rates in CA and GA, 2004 – 2008. Figure 2: Deaths (Count) Among Individuals with SCD in CA and GA, by Age Group and Underlying Cause of Death, 2004-2008 (N=615) Figure 2:. Deaths (Count) Among Individuals with SCD in CA and GA, by Age Group and Underlying Cause of Death, 2004-2008 (N=615) Disclosures No relevant conflicts of interest to declare.

scholarly journals Occurrence of fatal infective endocarditis: a population-based study in Finland

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Elina Ahtela ◽  
Jarmo Oksi ◽  
Jussi Sipilä ◽  
Päivi Rautava ◽  
Ville Kytö
Keyword(s):  
Infective Endocarditis ◽  
Incidence Rate ◽  
Cause Of Death ◽  
Adult Population ◽  
Population Based ◽  
Background Population ◽  
General Adult Population ◽  
Young Adult Population ◽  
Underlying Cause Of Death ◽  
First Time

Abstract Background Infective endocarditis (IE) is a serious mainly bacterial infection associated with high mortality. Epidemiology of fatal IE is however largely unknown. We studied occurrence and trends of fatal IE in a population-based setting. Methods All adults (≥18 years of age) who deceased due to IE in Finland during 2004–2016 were studied. Data was collected from the nationwide, obligatory Cause of Death Registry. Background population consisted of 28,657,870 person-years and 651,556 deaths. Results Infective endocarditis contributed to death in 754 cases and was the underlying cause of death in 352 cases. The standardized incidence rate of deaths associated with IE was 1.42 (95% confidence interval (CI): 1.32–1.52) per 100,000 person-years. Incidence rate increased progressively with aging from 50 years of age. Men had a two-fold risk of acquiring fatal infective endocarditis compared to women (risk ratio (RR) 1.95; 95% CI: 1.71–2.22; P < 0.0001). On average, IE contributed to 1.16 (95% CI: 1.08–1.24) out of 1000 deaths in general adult population. The proportionate amount of deaths with IE was highest in population aged < 40 years followed by gradual decrease with aging. Incidence rate and proportion of deaths caused by IE remained stable during the study period. Conclusions Our study describes for the first time the population-based epidemiology of fatal IE in adults. Men had a two-fold risk of acquiring fatal IE compared to women. Although occurrence of fatal IE increased with aging, the proportion of deaths to which IE contributed was highest in young adult population.

scholarly journals Why are epilepsy mortality rates rising in the United States? A population-based multiple cause-of-death study

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e035767
Author(s):  
Christopher M DeGiorgio ◽  
Ashley Curtis ◽  
Armen Carapetian ◽  
Dominic Hovsepian ◽  
Anusha Krishnadasan ◽  
...  
Keyword(s):  
Heart Disease ◽  
Vascular Dementia ◽  
Ischaemic Heart Disease ◽  
Cause Of Death ◽  
Causes Of Death ◽  
Mortality Rates ◽  
Population Based ◽  
All Cause Mortality ◽  
The Usa ◽  
Underlying Causes

IntroductionEpilepsy mortality rates are rising. It is unknown whether rates are rising due to an increase in epilepsy prevalence, changes in epilepsy causes of death, increase in the lethality or epilepsy or failures of treatment. To address these questions, we compare epilepsy mortality rates in the USA with all-cause and all-neurological mortality for the years 1999 to 2017.ObjectivesTo determine changes in US epilepsy mortality rates versus all-cause mortality, and to evaluate changes in the leading causes of death in people with epilepsy.DesignRetrospective population-based multiple cause-of-death study.Primary outcomeChange in age-adjusted epilepsy mortality rates compared with mortality rates for all-cause and all-neurological mortality.Secondary outcomeChanges in the leading causes of death in epilepsy.ResultsFrom 1999 to 2017, epilepsy mortality rates in the USA increased 98.8%, from 5.83 per million in 1999 to 11.59 per million (95% CI 88.2%–110.0%), while all-cause mortality declined 16.4% from 8756.34 per million to 7319.17 per million (95% CI 16.3% to 16.6%). For the same period, all-neurological mortality increased 80.8% from 309.21 to 558.97 per million (95% CI 79.4%–82.1%). The proportion of people with epilepsy who died due to neoplasms, vascular dementia and Alzheimer’s increased by 52.3%, 210.1% and 216.8%, respectively. During the same period, the proportion who died due to epilepsy declined 27.1%, while ischaemic heart disease as a cause of death fell 42.6% (p<0.001).ConclusionsEpilepsy mortality rates in the USA increased significantly from 1999 to 2017. Likely causes include increases in all-neurological mortality, increased epilepsy prevalence and changes in the underlying causes of death in epilepsy, led by increases in vascular dementia and Alzheimer’s. An important finding is that ischaemic heart disease and epilepsy itself are declining as underlying causes of death in people with epilepsy.

scholarly journals Excess cause-specific mortality in in-patient-treated individuals with personality disorder: 25-year nationwide population-based study

2015 ◽  
Vol 207 (4) ◽  
pp. 339-345 ◽  
Author(s):  
Emma Björkenstam ◽  
Charlotte Björkenstam ◽  
Herman Holm ◽  
Bengt Gerdin ◽  
Lisa Ekselius
Keyword(s):  
Personality Disorder ◽  
Personality Disorders ◽  
Causes Of Death ◽  
Premature Mortality ◽  
Population Based ◽  
Primary Diagnosis ◽  
Population Based Study ◽  
Causes Of Mortality ◽  
Underlying Causes ◽  
Standardised Mortality Ratios

BackgroundAlthough personality disorders are associated with increased overall mortality, less is known about cause of death and personality type.AimsTo determine causes of mortality in ICD personality disorders.MethodBased on data from Swedish nationwide registers, individuals admitted to hospital with a primary diagnosis of personality disorder between 1987 and 2011 were followed with respect to mortality until 31 December 2011. Standardised mortality ratios (SMRs) with 95% confidence intervals and underlying causes of death were calculated.ResultsAll-cause SMRs were increased, overall and in all clusters, for natural as well as unnatural causes of death. The overall SMR was 6.1 in women and 5.0 in men, as high as previously reported for anorexia nervosa, with higher rates in cluster B and mixed/other personality disorders. The SMR for suicide was 34.5 in women and 16.0 in men for cluster B disorders. Somatic and psychiatric comorbidity increased SMRs.ConclusionsThe SMR was substantially increased for all personality disorder clusters. Thus, there was an increased premature mortality risk for all personality disorders, irrespective of category.

scholarly journals Educational inequalities in fracture-related mortality using multiple cause of death data in the Skåne region, Sweden

2018 ◽  
Vol 48 (1) ◽  
pp. 72-79 ◽  
Author(s):  
Maria Lindéus ◽  
Martin Englund ◽  
Aliasghar A. Kiadaliri
Keyword(s):  
Hip Fracture ◽  
Cause Of Death ◽  
Rate Ratio ◽  
Cox Regression ◽  
Mortality Rates ◽  
Population Based ◽  
Therapeutic Interventions ◽  
Educational Inequalities ◽  
Individual Level ◽  
Related Mortality

Aim: To assess the absolute and relative educational inequalities in mortality from hip and non-hip fractures in Skåne region, Sweden. Methods: We conducted a population-based open cohort study. People aged 30–99 years, resident in the region during 1998–2013 ( n = 999, 148) were followed until death, their 100th birthday, relocation outside Skåne, or the end of 2014. We obtained individual-level data from the Statistics Sweden and the Swedish National Board of Health and Welfare’s Cause of Death Register. Death certificates coded with any fracture diagnosis were defined as fracture-related deaths. Educational inequalities were assessed by slope and relative indices of inequality (SII and RII). Cox regression and additive hazard models were used to estimates these indices. Results: During a mean follow-up of 12.2 years, there were 5,121 fracture-related deaths, of which 3,110 were associated with hip fracture. Age-standardized, hip fracture-related mortality rates per 100,000 person-years were 31, 95% confidence interval (CI) (30, 32) and 23 (20, 26) in people with low and high levels of education, respectively (rate ratio 1.4, 95% CI (1.2, 1.5)). Corresponding mortality rates for non-hip-fracture related deaths were 20 (18, 21) and 16 (14, 19) (rate ratio 1.2, 95% CI (1.0, 1.4)). SII and RII revealed educational inequalities in hip fracture-related mortality in favour of highly educated people. For non hip fracture-related mortality, there were statistically significant educational inequalities in people aged <70 years. Conclusions: We found higher fracture-related mortality with lower education suggesting preventative and therapeutic interventions for fractures should pay special attention to people with low-level education.

scholarly journals Influenza-related deaths - available methods for estimating numbers and detecting patterns for seasonal and pandemic influenza in Europe

2012 ◽  
Vol 17 (18) ◽  
Author(s):  
A Nicoll ◽  
B C Ciancio ◽  
V Lopez Chavarrias ◽  
K Mølbak ◽  
R Pebody ◽  
...  
Keyword(s):  
Influenza Pandemic ◽  
National Level ◽  
Premature Mortality ◽  
Laboratory Diagnosis ◽  
Population Based ◽  
Premature Deaths ◽  
Modelling Techniques ◽  
Minimum Estimate ◽  
2009 Influenza Pandemic ◽  
Related Mortality

Two methodologies are used for describing and estimating influenza-related mortality: Individual-based methods, which use death certification and laboratory diagnosis and predominately determine patterns and risk factors for mortality, and population-based methods, which use statistical and modelling techniques to estimate numbers of premature deaths. The total numbers of deaths generated from the two methods cannot be compared. The former are prone to underestimation, especially when identifying influenza-related deaths in older people. The latter are cruder and have to allow for confounding factors, notably other seasonal infections and climate effects. There is no routine system estimating overall European influenza-related premature mortality, apart from a pilot system EuroMOMO. It is not possible at present to estimate the overall influenza mortality due to the 2009 influenza pandemic in Europe, and the totals based on individual deaths are a minimum estimate. However, the pattern of mortality differed considerably between the 2009 pandemic in Europe and the interpandemic period 1970 to 2008, with pandemic deaths in 2009 occurring in younger and healthier persons. Common methods should be agreed to estimate influenza-related mortality at national level in Europe, and individual surveillance should be instituted for influenza-related deaths in key groups such as pregnant women and children.

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