The Danish Multiple Sclerosis Registry: a 50-year follow-up

1999 ◽  
Vol 5 (4) ◽  
pp. 293-296 ◽  
Author(s):  
Nils Koch-Henriksen

The Danish Multiple Sclerosis Registry was established in 1948 in continuation with a nationwide survey of the prevalence of Multiple Sclerosis (MS) in Denmark. The register has since collected information on MS patients from all Danish departments of neurology, practising neurologists, MS rehabilitation centres, the National Patient Registry, the Danish MS Society, and departments of neuropathology. The registry is linked with the Danish Central Population Registry. The completeness has been estimated at more than 90%. All cases are reclassified by two neurologists as to diagnosis and year of onset. 12 070 cases with a confirmed diagnosis of MS are kept in the databases. They were prevalent in 1949 or have had onset in the period 1948-1993. The registry is continuously updated with new information on registered cases and new cases. The crude average annual incidence rate 1980-89 was 4.99/105; the prevalence rate was 112/105 by 1 January 1990. Cross-linking with other registers have enabled analytical prospective epidemiological studies, and the registry has provided population based unbiassed samples of patients for a number of clinical studies.

Author(s):  
Anna Svenningsson ◽  
Anna Gunnarsdottir ◽  
Tomas Wester

Abstract Introduction Colorectal cancer (CRC) has been reported in early adulthood in patients with anorectal malformation (ARM), and therefore, the need of endoscopic controls has been discussed. The aim of this study was to assess the risk of CRC in patients with ARM. Materials and Methods This was a nationwide population-based study with data from Swedish national health care registers. All patients diagnosed with ARM born in Sweden between 1964 and 1999 were identified in the National Patient Register. The same group was followed up in the Swedish Cancer Register from birth to December 31, 2014, for occurrences of CRC. Five age- and gender-matched individuals randomly selected from the Medical Birth Register served as controls for each ARM patient born between 1973 and 1999. Results A total of 817 patients (474 males) with ARM were included and followed up from birth to the end of observational period. Time of follow-up ranged from 15 to 50 years (mean: 28 years). None of the patients was diagnosed with CRC during the observational period. One case of rectal cancer and one case of sigmoid cancer were detected among the 3,760 controls. Conclusion In our study, the risk of CRC in early adulthood in patients with ARM is low. Our result does not support routine endoscopic follow-up for patients with ARM during the first decade of life.


2004 ◽  
Vol 56 (2) ◽  
pp. 303-306 ◽  
Author(s):  
Sean J. Pittock ◽  
Robyn L. McClelland ◽  
William T. Mayr ◽  
Neal W. Jorgensen ◽  
Brian G. Weinshenker ◽  
...  

2003 ◽  
Vol 9 (6) ◽  
pp. 616-620 ◽  
Author(s):  
Scott B Patten ◽  
Shanika Fridhandler ◽  
Cynthia A Beck ◽  
Luanne M Metz

Background: Recent side effect data from clinical trials of interferon beta in multiple sclerosis (MS) have failed to confirm that these medications are associated with an increased risk of depression. However, these studies have used highly selected samples and the results may not be generalizable to real world settings. Methods: C linical data on subjects from southern A lberta who have applied for, or are receiving, public reimbursement for MS treatment are maintained in a database at the University of C algary Multiple Sclerosis C linic. Depression ratings obtained using the C enter for Epidemiological Studies Depression Rating Scale (C ES-D) are included in this database. In the current analysis, these longitudinal data were used to determine whether depressive symptoms were associated with disease-modifying treatments. Results: A t baseline, ratings were available for 163 subjects. Those choosing interferon beta resembled those choosing glatiramer acetate in most respects. During follow-up, no differences were observed in the prevalence or incidence of depression and C ES-D scores were not found to differ between the treatment groups. Conclusions: The failure to identify higher rates of depression both in previous intervention studies and in the current observational study provides confirmation that these drugs are not substantially associated with the occurrence of depression.


2019 ◽  
pp. oemed-2018-105469 ◽  
Author(s):  
Aisha S Dickerson ◽  
Johnni Hansen ◽  
Aaron J Specht ◽  
Ole Gredal ◽  
Marc G Weisskopf

ObjectivesPrevious research has indicated links between lead (Pb) exposure and increased risk of neurodegenerative disorders, including amyotrophic lateral sclerosis (ALS). In this study, we evaluated the association between occupational Pb exposures and ALS.MethodsALS cases were ascertained through the Danish National Patient Registry from 1982 to 2013 and age and sex-matched to 100 controls. Using complete employment history since 1964 from the Danish Pension Fund, cumulative Pb exposure was estimated for each subject via a Danish job exposure matrix. Associations were evaluated using conditional logistic regression analyses and stratified by sex.ResultsFor men with >50% probability of exposure, there was an increase in odds of ALS for exposures in the 60th percentile or higher during any time 5 years prior to diagnosis (aOR: 1.35; 95% CI 1.04 to 1.76) and 10 years prior to diagnosis (aOR: 1.33; 95% CI 1.03 to 1.72). No significant associations were observed in women, and there were no linear trends seen for Pb exposures for either sex.ConclusionsOur study indicates an association between consistently higher occupational Pb exposures and ALS. These findings support those of previously reported associations between ALS and specific occupations that commonly experience Pb exposure.


2018 ◽  
Vol 109 (2) ◽  
pp. 96-101 ◽  
Author(s):  
C. Odensten ◽  
K. Strigård ◽  
M. Dahlberg ◽  
U. Gunnarsson ◽  
P. Näsvall

Background: Parastomal hernia is common, but there are few population-based studies showing the frequency and outcome of parastomal hernia repair in routine surgical practice. The aim of this study was to identify patients undergoing surgery for parastomal hernia in Sweden and to define risk factors for complication and recurrence. Methods: A broad search of the Swedish National Patient Register 1998–2007 for all possible parastomal hernia repairs using surgical procedure codes. Records of all patients identified were reviewed and those with a definite parastomal hernia procedure were included and analyzed. Results: A total of 71 patients were identified after review of the records. The most common reason for surgery was cosmetic and the most frequent method was relocation of the stoma. Parastomal hernia recurrence rate was 18% during follow-up of a minimum 2 years. Overall, a surgical complication occurred in 32%. Possible risk factors were analyzed including emergency surgery versus planned, gender, age, indication for surgery, and method of surgery; none of which was significant. Conclusion: The frequency of parastomal hernia procedures was much lower than suggested by previous studies. The number of procedures per surgeon was even lower than expected. No specific risk factor could be identified. Parastomal hernia auditing in the form of a nationwide quality register should be mandatory. Centralization should be considered.


2020 ◽  
Vol 29 (1) ◽  
pp. 59-67
Author(s):  
Karen J. Cruickshanks ◽  
David M. Nondahl ◽  
Mary E. Fischer ◽  
Carla R. Schubert ◽  
Ted S. Tweed

Purpose Longitudinal population-based cohort data were used to develop a standardized classification system for age-related hearing impairment using thresholds for frequencies (0.5–8 kHz) typically measured in cohort studies. Method Audiometric testing data collected in the Epidemiology of Hearing Loss Study from participants ( n = 1,369) with four visits (1993–1995, 1998–2000, 2003–2005, and 2009–2010) were included (10,952 audiograms). Cluster analyses (Wald's method) were used to identify audiometric patterns. Maximum allowable threshold values were defined for each cluster to create an ordered scale. Progression was defined as a two-step change. Results An eight-step scale was developed to capture audiogram shape and severity of hearing impairment. Of the 1,094 participants classified as having normal hearing based on a pure-tone average, only 25% ( n = 277) were classified as Level 1 (all thresholds ≤ 20 dB HL) on the new scale, whereas 17% ( n = 182) were Levels 4–6. During the 16-year follow-up, 64.9% of those at Level 1 progressed. There was little regression using this scale. Conclusions This is the first scale developed from population-based longitudinal cohort data to capture audiogram shape across time. This simple, standardized scale is easy to apply, reduces misclassification of normal hearing, and may be a useful method for identifying risk factors for early, preclinical, age-related changes in hearing.


2021 ◽  
Vol 22 (1) ◽  
Author(s):  
James G. Heaf ◽  
Rafal Yahya ◽  
Morten Dahl

Abstract Background It has been suggested that, in patients with CKD stage 5, measured GFR (mGFR), defined as the mean of urea and creatinine clearance, as measured by a 24-h urine collection, is a better measure of renal function than estimated GFR (eGFR), based on the CKD-EPI formula. This could be due to reduced muscle mass in this group. Its use is recommended in the ERBP guidelines. Unplanned dialysis initiation (DI) is associated with increased morbidity, mortality, and reduced modality choice and is generally considered undesirable. We hypothesized that the ratio mGFR/eGFR (M/E) aids prediction of death and DI. Methods All 24-h measurements of urea and creatinine excretion were extracted from the clinical biochemistry databases in Zealand. Data concerning renal diagnosis, comorbidity, biochemistry, medical treatment, mortality and date of DI, were extracted from patient notes, the National Patient Registry and the Danish Nephrology Registry. Patients were included if their eGFR was < 30 ml/min/1.73m2. The last available value for each patient was included. Follow-up was 12 months. Results One thousand two hundred sixty-five patients were included. M/E was median 0.91 ± 0.43. It was highly correlated to previous determinations. It was negatively correlated to eGFR, comorbidity, high age and female sex. It was positively related to albumin and negatively to C-reactive protein. M/E was higher in patients treated with ACE inhibitors and diuretics but no other treatment groups. On a multivariate analysis, M/E was negatively correlated with mortality and combined mortality/DI, but not DI. A post hoc analysis showed a negative correlation to DI at 3 months. For patients with an eGFR 10–15 ml/min/1.73m2, combined mortality and DI at 3 months was for low M/E (< 0.75) 36%, medium (0.75–1.25) 20%, high (> 1.25) 8%. A low M/E predicted increased need for unplanned DI. A supplementary analysis in 519 patients where body surface area values were available, allowing BSA-corrected M/E to be analyzed, revealed similar results. Conclusion A low mGFR/eGFR ratio is associated with comorbidity, malnutrition, and inflammation. It is a marker of early DI, mortality, and unplanned dialysis initiation, independently of eGFR, age and comorbidity. Particular attention paid to patients with a low M/E may lower the incidence of unplanned dialysis requirement.


Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 3219-3219
Author(s):  
Caspar Da Cunha-Bang ◽  
Klaus Rostgaard ◽  
Jacob Simonsen ◽  
Christian H Geisler ◽  
Henrik Hjalgrim ◽  
...  

Abstract Background The management of chronic lymphocytic leukemia (CLL) is in rapid transition and tailored individual therapy is a likely future scenario for those needing treatment. Previous studies of CLL have revealed an increased risk of second cancers. The underlying mechanisms are unclear, but may involve shared risk factors, weakened immune surveillance, and chemotherapy exposure. However, little is known about the impact of CLL treatment on second cancer risk. We followed Danish population-based cohorts of treated and untreated CLL patients and compared their risk of second cancers with that of matched controls. Methods All patients registered with a diagnosis of CLL in the Danish Cancer Registry 2002-2013 were included in the analyses. For each CLL patient, we randomly selected 50 CLL-free control persons matched on age and gender from the general population. Patients and controls were followed for new cancers registered in the Danish Cancer Registry 2002-2013 using ICD10 codes. Information about CLL treatment was available from The Danish National Patient Registry allowing us to stratify patients accordingly. Follow up of the patients and controls were done separately for each cancer type without competing risk. Adjusted hazard ratios (HR) and 95% confidence intervals (95%CI) for new cancers by time since CLL diagnosis /matching date for controls were calculated using Cox regression analyses. Results Overall, 4,919 CLL patients with a median person-years of follow-up (PYFU) of 3.9 and 245,877 controls with a median PYFU of 4.6 were included. During follow-up, a total of 694 new malignancies, 54 hematological (excluding CLL) and 640 non-hematological, were registered among the CLL patients (eight patients developed both hematological and non-hematological malignancies). This corresponded to increased relative risks for combined groups of hematological (HR, 1.3; 95% CI, 1.0 to 1.7) and of non-hematological (HR, 1.4; 95% CI, 1.3 to 1.5) cancers, respectively, compared to the controls. Chemotherapy treatment was registered for 1,664 (34%) of the CLL patients during follow-up, and this was accompanied by increased relative risks of both hematological cancers excluding CLL (HR, 2.7; 95% CI, 1.9 to 4.1) and non-hematological cancers (HR, 1.8; 95% CI, 1.6 to 2.1). In contrast, risks of hematological cancer were not increased (HR, 0.9; 95% CI, 0.6 to 1.3) and risk of non-hematological cancers only slightly increased (HR, 1.3; 95% CI, 1.1 to 1.4), among untreated CLL patients. In site-specific analyses the increased risk among treated CLL patients pertained to Hodgkin and non-Hodgkin lymphomas, myelodysplastic syndrome, lung, skin, and thyroid cancer with HR's ranging from 1.8 to 13.3. Conclusions CLL patients treated with chemotherapy are at increased risk of other hematological and non-hematological malignancies. Increased awareness and possibly cancer screening programs are warranted for CLL patients receiving chemotherapy. Detailed analyses of the role of different types of CLL specific treatments on risk of second cancers based on the Danish Cancer Registry, the Danish National Patient Registry and the Danish National CLL Registry are ongoing. Disclosures Geisler: Roche: Consultancy; Janssen: Consultancy; Celgene: Consultancy; Sanofi: Consultancy. Niemann:Abbvie: Research Funding; Roche: Consultancy; Gilead: Consultancy; Abbvie: Consultancy; Janssen: Consultancy.


Neurology ◽  
2019 ◽  
Vol 93 (12) ◽  
pp. e1148-e1158
Author(s):  
Cande V. Ananth ◽  
Anne Vinkel Hansen ◽  
Mitchell S.V. Elkind ◽  
Michelle A. Williams ◽  
Janet W. Rich-Edwards ◽  
...  

ObjectiveTo test whether abruption during pregnancy is associated with long-term cerebrovascular disease by assessing the incidence and mortality from stroke among women with abruption.MethodsWe designed a population-based prospective cohort study of women who delivered in Denmark from 1978 to 2010. We used data from the National Patient Registry, Causes of Death Registry, and Danish Birth Registry to identify women with abruption, cerebrovascular events, and deaths. The outcomes included deaths resulting from stroke and nonfatal ischemic and hemorrhagic strokes. We fit Cox proportional hazards regression models for stroke outcomes, adjusting for the delivery year, parity, education, and smoking.ResultsThe median (interquartile range) follow-up in the nonabruption and abruption groups was 15.9 (7.8–23.8) and 16.2 (9.6–23.1) years, respectively, among 828,289 women with 13,231,559 person-years of follow-up. Cerebrovascular mortality rates were 0.8 and 0.5 per 10,000 person-years among women with and without abruption, respectively (hazard ratio [HR] 1.6, 95% confidence interval [CI] 0.9–3.0). Abruption was associated with increased rates of nonfatal ischemic stroke (HR 1.4, 95% CI 1.1–1.7) and hemorrhagic stroke (HR 1.4, 95% CI 1.1–1.9). The association of abruption and stroke was increased with delivery at <34 weeks, when accompanied by ischemic placental disease, and among women with ≥2 abruptions. These associations are less likely to have been affected by unmeasured confounding.ConclusionAbruption is associated with increased risk of cerebrovascular morbidity and mortality. Disruption of the hemostatic system manifesting as ischemia and hemorrhage may indicate shared etiologies between abruption and cerebrovascular complications.


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