127th ENMC International Workshop: Implementation of a European Registry of ALS Naarden, The Netherlands, 8–10 October 2004

Beghi, Ettore

doi:10.1016/j.nmd.2005.10.004

Cited by 19 publications

(14 citation statements)

References 37 publications

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“…The European consortium of National Registers (EURALS) (36) represents an ideal setting for case ascertainment using the capture-recapture method. EURALS was established in 2004 to coordinate the scientific activities of six population based registries (Scotland; Ireland; Piemonte/Valle d’Aosta, Italy; Puglia, Italy; Lombardia, Italy; Preston, England) and tertiary centres (Belgrade, Madrid, Moskow, Tel-Aviv).…”

Section: Resultsmentioning

confidence: 99%

The epidemiology and treatment of ALS: Focus on the heterogeneity of the disease and critical appraisal of therapeutic trials

Beghi¹,

Chiò

Couratier³

et al. 2010

Amyotrophic Lateral Sclerosis

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110

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Effective treatments for amyotrophic lateral sclerosis (ALS) have remained elusive. Only riluzole, a drug thought to affect glutamate metabolism, improves survival albeit to modest extent. Explanations for the negative results of therapeutic trials include a likely heterogeneity, both in disease susceptibility and pathogenic mechanisms, and faulty methodology of clinical trials. Further understanding of these factors will lead to improvements in patient stratification, and in the design of future clinical trials.

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Section: Resultsmentioning

confidence: 99%

The epidemiology and treatment of ALS: Focus on the heterogeneity of the disease and critical appraisal of therapeutic trials

Beghi¹,

Chiò

Couratier³

et al. 2010

Amyotrophic Lateral Sclerosis

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110

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“…To overcome this challenge, several population-based registries were established in the early 1990s to prospectively survey the epidemiology of ALS in defined geographical regions 8,15. The ALS CARE database, which is a clinical registry using a simple questionnaire, is another distinct multicenter-based registry in North America 9,10.…”

Section: Discussionmentioning

confidence: 99%

“…Thus, we included a "suspected" ALS category, which was dropped from the revised ECC, and included a "laboratory-supported probable ALS" category based on the results of the electrophysiological examination as a novel category for the revised ECC. The Pan-European ALS registry, which is the largest ALS database in the world, recommended and used these same criteria for their enrollment 15. According to these criteria, an ALS patient was classified as definite, probable, possible, laboratory-supported probable, or suspected ALS based on the impairment of upper motor neurons (UMNs) and/or lower motor neurons and on the number of involved regions (bulbar, cervical, thoracic, and lumbosacral).…”

Section: Methodsmentioning

confidence: 99%

Current Status of the Diagnosis and Management of Amyotrophic Lateral Sclerosis in Korea: A Multi-Center Cross-Sectional Study

et al. 2012

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Background and PurposeRecently published, evidence-based guidelines should alter the management of amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). However, the newest recommendations for ALS/MND therapy are not reflected in actual clinical practice. We sought to evaluate the current status of the diagnosis and management of ALS in Korea.MethodsThe Korean ALS/MND research group was organized in 2010, involving more than 50 neurologists from neuromuscular centers in Korea. Participating centers collected data from April to September 2010 on the diagnosis and management of patients with ALS. Data forms from the ALS patient care database, which is a component of the ALS clinical assessment, research, and education program (http://www.outcomes-umassmed.org/ALS/), were modified and used for data collection.ResultsIn total, 373 sporadic ALS cases from 35 centers were enrolled. The demographic features and clinical findings were similar to those in previous reports from other countries. The mean age at onset was 50-60 years, and a slight male predominance was observed. The enrolled patients predominantly showed focal onset of cervical or lumbosacral symptoms. Only about one-half of the indicated patients (31.4%) received a physician's recommendation for a parenteral gastrostomy, and 18.1% underwent the procedure. Noninvasive ventilation was recommended in 23% of patients, but applied in only 9.5% of them. Tracheostomy was performed in 12.7% of patients.ConclusionsThe demographic and clinical features of the diagnosis and management of ALS in Korea are similar to those reported in other countries; however, supportive management, as recommended in evidence-based guidelines, are not yet widely recommended or performed for patients with ALS in Korea.

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“…This is an international collaboration between national and regional population-based registries located in Italy, England, Scotland, and Ireland (8). Given the fairly large size of the population at risk (in excess of 25 million), EURALS can identify up to 500 newly diagnosed ALS patients annually.…”

Section: Methodsmentioning

confidence: 99%

Amyotrophic lateral sclerosis, physical exercise, trauma and sports: Results of a population-based pilot case-control study

Beghi

Logroscino

Chiò

et al. 2010

Amyotrophic Lateral Sclerosis

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112

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Our objective was to investigate exposure to physical exercise and trauma in patients with amyotrophic lateral sclerosis (ALS) compared to the general population. Previous studies in this area have yielded conflicting results. Using population-based ALS registries from Italy, the UK and Ireland, newly diagnosed patients with definite, probable or possible ALS were enrolled in a case-control study with two age- and sex-matched controls for each patient. Source, intensity and duration of physical activity and history of trauma were recorded. We here present the results of a pilot investigation. We studied 61 patients and 112 controls. Forty-one per cent of cases and 17.0% of controls (p = 0.001) had blue-collar occupations; 13.1% versus 3.6% reported strenuous physical activity at work (p = 0.05). Compared with controls, ALS patients had a longer exposure to work-related (10.7 vs. 7.3 years; p = 0.02) and sport-related physical exercise (9.6 vs. 5.2 years; p = 0.005). Three patients (0 controls) reported professional sports (p < 0.04). Traumatic events were similar. Blue collar occupation (OR 4.27; 95% CI 1.68–10.88) and duration of sport-related physical exercise (OR 1.03; 95% CI 1.00–1.05) were independent variables in multivariate analysis. We concluded that ALS is associated with physical exercise but not with traumatic events.

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127th ENMC International Workshop: Implementation of a European Registry of ALS Naarden, The Netherlands, 8–10 October 2004

Cited by 19 publications

References 37 publications

The epidemiology and treatment of ALS: Focus on the heterogeneity of the disease and critical appraisal of therapeutic trials

The epidemiology and treatment of ALS: Focus on the heterogeneity of the disease and critical appraisal of therapeutic trials

Current Status of the Diagnosis and Management of Amyotrophic Lateral Sclerosis in Korea: A Multi-Center Cross-Sectional Study

Amyotrophic lateral sclerosis, physical exercise, trauma and sports: Results of a population-based pilot case-control study

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