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https://www.readbyqxmd.com/read/29020837/evaluating-the-completeness-of-the-national-als-registry-united-states
#1
Wendy E Kaye, Laurie Wagner, Ruoming Wu, Paul Mehta
Our objective was to evaluate the completeness of the United States National ALS Registry (Registry). We compared persons with ALS who were passively identified by the Registry with those actively identified in the State and Metropolitan Area ALS Surveillance project. Cases in the two projects were matched using a combination of identifiers, including, partial social security number, name, date of birth, and sex. The distributions of cases from the two projects that matched/did not match were compared and Chi-square tests conducted to determine statistical significance...
October 11, 2017: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
https://www.readbyqxmd.com/read/29020133/blood-lead-bone-turnover-and-survival-in-amyotrophic-lateral-sclerosis
#2
Fang Fang, Tracy L Peters, John D Beard, David M Umbach, Jean Keller, Daniela Mariosa, Kelli D Allen, Weimin Ye, Dale P Sandler, Silke Schmidt, Freya Kamel
Blood lead and bone turnover may be associated with the risk of amyotrophic lateral sclerosis (ALS). We aimed to assess whether these factors were also associated with time from ALS diagnosis to death through a survival analysis of 145 ALS patients enrolled during 2007 in the National Registry of Veterans with ALS. Associations of survival time with blood lead and plasma biomarkers of bone resorption (C-terminal telopeptides of type I collagen; CTX) and bone formation (procollagen type I amino-terminal peptide; PINP) were estimated using Cox models adjusted for age at diagnosis, diagnostic certainty, diagnostic delay, site of onset, and the revised ALS functional rating scale...
August 23, 2017: American Journal of Epidemiology
https://www.readbyqxmd.com/read/28982219/mechanical-ventilation-for-amyotrophic-lateral-sclerosis-motor-neuron-disease
#3
REVIEW
Aleksandar Radunovic, Djillali Annane, Muhammad K Rafiq, Ruth Brassington, Naveed Mustfa
BACKGROUND: Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease, is a fatal neurodegenerative disease. Neuromuscular respiratory failure is the most common cause of death, which usually occurs within two to five years of the disease onset. Supporting respiratory function with mechanical ventilation may improve survival and quality of life. This is the second update of a review first published in 2009. OBJECTIVES: To assess the effects of mechanical ventilation (tracheostomy-assisted ventilation and non-invasive ventilation (NIV)) on survival, functional measures of disease progression, and quality of life in ALS, and to evaluate adverse events related to the intervention...
October 6, 2017: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/28975435/life-course-body-mass-index-and-risk-and-prognosis-of-amyotrophic-lateral-sclerosis-results-from-the-als-registry-swabia
#4
Raphael Simon Peter, Angela Rosenbohm, Luc Dupuis, Torben Brehme, Jan Kassubek, Dietrich Rothenbacher, Gabriele Nagel, Albert Christian Ludolph
Weight loss appears as a strong predictor of survival of patients with amyotrophic lateral sclerosis, yet no data are currently available to describe the life course history of pre-diagnostic body mass index (BMI) in these patients. 393 ALS cases (mean age: 65.8 years, 57.3% men) and 791 controls matched by age and sex from a population-based case-control study of the ALS Registry Swabia were analyzed. Differences of BMI change in cases and controls over time were modeled using a multilevel additive model...
October 2017: European Journal of Epidemiology
https://www.readbyqxmd.com/read/28921834/the-role-of-pre-morbid-diabetes-on-developing-amyotrophic-lateral-sclerosis
#5
Fabrizio D'Ovidio, Angelo d'Errico, Paolo Carnà, Andrea Calvo, Giuseppe Costa, Adriano Chiò
BACKGROUND: The literature on the association between diabetes and Amyotrophic Lateral Sclerosis (ALS) counts a limited number of studies. This cohort study was developed in order to assess the role of diabetes on the risk of developing ALS. METHODS: The study population was represented by all residents in Turin (Italy) at the beginning of 1996, already present at 1991 Census, older than 14 years (n=727,977), followed up for ALS occurrence from 1998 to 2014. Presence of diabetes at baseline or during the follow-up was ascertained through two Piedmont regional sources: the Diabetes Registry and the ATC Drugs Prescriptions Archive...
September 18, 2017: European Journal of Neurology: the Official Journal of the European Federation of Neurological Societies
https://www.readbyqxmd.com/read/28827198/survival-of-cardiac-arrest-patients-on-ski-slopes-a-10-year-analysis-of-the-northern-french-alps-emergency-network
#6
Damien Viglino, Maxime Maignan, Arnaud Michalon, Julien Turk, Sarah K Buse, Marc Blancher, Tom P Aufderheide, Loïc Belle, Dominique Savary, François-Xavier Ageron, Guillaume Debaty
AIM: Intense physical activity, cold and altitude make mountain sports a cause of increased risk of out-of-hospital cardiac arrest (OHCA). The difficulties of pre-hospital management related to this challenging environment could be mitigated by the presence of ski-patrollers in ski areas and use of helicopters for medical rescue. We assess whether this particular situation positively impacts the chain of survival compared to the general population. METHODS: Analysis of prospectively collected data from the cardiac arrest registry of the Northern French Alps Emergency Network (RENAU) from 2004 to 2014...
October 2017: Resuscitation
https://www.readbyqxmd.com/read/28705085/international-survey-of-als-experts-about-critical-questions-for-assessing-patients-with-als
#7
Mamede De Carvalho, Adam Ryczkowski, Peter Andersen, Marta Gromicho, Julian Grosskreutz, Magdalena Kuźma-Kozakiewicz, Susanne Petri, Maria Piotrkiewicz, Gabriel Miltenberger Miltenyi
OBJECTIVE: To define an applicable dataset for ALS patient registries we weighted specific clinical items as scored by worldwide ALS experts. METHODS: Sixty participants were invited based on relevant clinical work, publications and personal acquaintance. They rated 160 clinical items consensually agreed by the members of our project, incorporating specialists from five European Centres. Scoring scheme was defined as: 1 - essential; 2 - important; 3 - not very important...
July 13, 2017: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
https://www.readbyqxmd.com/read/28663573/adipokines-c-reactive-protein-and-amyotrophic-lateral-sclerosis-results-from-a-population-based-als-registry-in-germany
#8
Gabriele Nagel, Raphael S Peter, Angela Rosenbohm, Wolfgang Koenig, Luc Dupuis, Dietrich Rothenbacher, Albert C Ludolph
To investigate the associations of leptin, adiponectin and high-sensitive (hs) C-reactive protein (CRP) with risk and prognosis of amyotrophic lateral sclerosis (ALS). Data from a population-based case-control study in Southern Germany (10/2010-6/2014) of 289 ALS patients (mean age of 65.7 (SD 10.5) years, 59.5% men) and 506 controls were included. During median follow-up of 14.5 months of 279 ALS patients 104 (53.9% men, 68.9 (10.3) years) died. Serum samples were measured for leptin, adiponectin and hs-CRP...
June 29, 2017: Scientific Reports
https://www.readbyqxmd.com/read/28624594/variability-in-the-initiation-of-resuscitation-attempts-by-emergency-medical-services-personnel-during-out-of-hospital-cardiac-arrest
#9
Steven C Brooks, Robert H Schmicker, Sheldon Cheskes, Jim Christenson, Alan Craig, Mohamud Daya, Peter J Kudenchuk, Graham Nichol, Dana Zive, Laurie J Morrison
BACKGROUND: Some patients with out-of-hospital cardiac arrest (OHCA) assessed by emergency medical services (EMS) do not receive attempts at resuscitation on the basis of perceived futility. AIMS: 1) To measure variability in the initiation of resuscitation attempts in EMS-assessed OHCA patients across EMS agencies, 2) to evaluate the association between selected EMS agency characteristics and the proportion of patients receiving resuscitation attempts, and 3) to evaluate the association between proportion receiving resuscitation attempts and survival...
August 2017: Resuscitation
https://www.readbyqxmd.com/read/28585120/occupational-formaldehyde-and-amyotrophic-lateral-sclerosis
#10
Ryan M Seals, Marianthi-Anna Kioumourtzoglou, Ole Gredal, Johnni Hansen, Marc G Weisskopf
Prior studies have yielded inconsistent evidence regarding the association between formaldehyde exposure and amyotrophic lateral sclerosis (ALS). We conducted a population case-control study in the Danish National Registries on the relationship between occupationally-derived formaldehyde exposure and ALS. Occupational history was obtained from a comprehensive and prospectively recorded pension database of all paid work in Denmark since 1964, and was linked to a job-exposure matrix to derive individual exposure estimates...
October 2017: European Journal of Epidemiology
https://www.readbyqxmd.com/read/28426258/improvements-in-out-of-hospital-cardiac-arrest-survival-from-1998-to-2013
#11
Yutaka Yamaguchi, Jeff A Woodin, Koichiro Gibo, Dana M Zive, Mohamud R Daya
OBJECTIVES: Out-of-hospital cardiac arrest (OHCA) remains a major public health burden. Aggregate OHCA survival to hospital discharge has reportedly remained unchanged at 7.6% for almost 30 years from 1970 to 2008. We examined the trends in adult OHCA survival over a 16-year period from 1998 to 2013 within a single EMS agency. METHODS: Observational cohort study of adult OHCA patients treated by Tualatin Valley Fire & Rescue (TVF&R) from 1998 to 2013. This is an ALS first response fire agency that maintains an active Utstein style cardiac arrest registry and serves a population of approximately 450,000 in 9 incorporated cities in Oregon...
September 2017: Prehospital Emergency Care
https://www.readbyqxmd.com/read/28387141/nationwide-incidence-of-motor-neuron-disease-using-the-french-health-insurance-information-system-database
#12
Sofiane Kab, Frédéric Moisan, Pierre-Marie Preux, Benoît Marin, Alexis Elbaz
OBJECTIVE: There are no estimates of the nationwide incidence of motor neuron disease (MND) in France. We used the French health insurance information system to identify incident MND cases (2012-2014), and compared incidence figures to those from three external sources. METHODS: We identified incident MND cases (2012-2014) based on three data sources (riluzole claims, hospitalisation records, long-term chronic disease benefits), and computed MND incidence by age, gender, and geographic region...
August 2017: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
https://www.readbyqxmd.com/read/28384752/serum-c-reactive-protein-as-a-prognostic-biomarker-in-amyotrophic-lateral-sclerosis
#13
RANDOMIZED CONTROLLED TRIAL
Christian Lunetta, Andrea Lizio, Eleonora Maestri, Valeria Ada Sansone, Gabriele Mora, Robert G Miller, Stanley H Appel, Adriano Chiò
Importance: Various factors have been proposed as possible candidates associated with the prognosis of amyotrophic lateral sclerosis (ALS); however, there is still no consensus on which biomarkers are reliable prognostic factors. C-reactive protein (CRP) is a biomarker of the inflammatory response that shows significant prognostic value for several diseases. Objective: To examine the prognostic significance of CRP in ALS. Design, Setting, and Participants: Patients' serum CRP levels were evaluated from January 1, 2009, to June 30, 2015, in a large cohort of patients with ALS observed by an Italian tertiary multidisciplinary center...
June 1, 2017: JAMA Neurology
https://www.readbyqxmd.com/read/28291494/military-emergency-medical-service-system-assessment-application-of-the-national-park-service-needs-assessment-and-program-audit-to-objectively-evaluate-the-military-ems-system-of-okinawa-japan
#14
Elliot M Ross, Stephen A Harper, Cord Cunningham, Benjamin D Walrath, Gerard DeMers, Chetan U Kharod
INTRODUCTION: As part of a Military Emergency Medical Services (EMS) system process improvement initiative, the authors sought to objectively evaluate the U.S. military EMS system for the island of Okinawa. They applied a program evaluation tool currently utilized by the U.S. National Park Service (NPS). METHODS: A comprehensive needs assessment was conducted to evaluate the current Military EMS system in Okinawa, Japan. The NPS EMS Program Audit Worksheet was used to get an overall "score" of our assessment...
March 2017: Military Medicine
https://www.readbyqxmd.com/read/28220290/epidemiology-of-amyotrophic-lateral-sclerosis-in-southern-germany
#15
Angela Rosenbohm, Raphael S Peter, Siegfried Erhardt, Dorothée Lulé, Dietrich Rothenbacher, Albert C Ludolph, Gabriele Nagel
The objective of this study is to determine the current distribution of clinical phenotypes and to estimate future trends of ALS incidence in Western societies. We report on a clinical-epidemiological registry with a capture-recapture rate of >80% and population-based case-control study in ALS patients in South Western Germany. 1163 incidents of ALS were registered. Clinical and neuropsychological data were prospectively collected from 699 cases. The mean age at onset was 66.6 (SD = 11.6) years in prospective cases (N = 699)...
April 2017: Journal of Neurology
https://www.readbyqxmd.com/read/28202420/out-of-hospital-cardiac-arrest-ohca-attended-by-mobile-emergency-teams-with-a-physician-on-board-results-of-the-spanish-ohca-registry-oshcar
#16
Fernando Rosell-Ortiz, Xavier Escalada-Roig, Patricia Fernández Del Valle, Luis Sánchez-Santos, José M Navalpotro-Pascual, Alfredo Echarri-Sucunza, José M Adsuar-Quesada, Isabel Ceniceros-Rozalén, José I Ruiz-Azpiazu, Karlos Ibarguren-Olalde, Nuria López-Cabeza, María V Mier-Ruiz, Enrique Martín-Sánchez, Marta Martínez Del Valle, Guadalupe Inza-Muñoz, Juan A Cordero Torres, María J García-Ochoa, José A Cortés-Ramas, Raúl Canabal-Berlanga, Rafael Zoyo López-Navarro, Juan B López-Messa, Javier García Del Águila, Daniel Alonso-Moreno, Carmen Pozo-Pérez, José Bravo-Castello, Natividad Ramos-García, Ignacio Gómez-Larrosa, Francisco J Mellado-Vergel
Most survival outcomes in out-of-hospital cardiac arrest (OHCA) are provided by emergency medical services (EMS) without a doctor on board. Our objective was to determine such outcomes in a whole country with public physician-led EMS. METHODS: We analyzed data from a nationwide prospective registry of OHCA cases attended by 19 public EMS in Spain, covering the period from 1-October 2013 to 30-October 2014. RESULTS: Advanced life support (ALS) was initiated in 9347 cases (incidence 18...
April 2017: Resuscitation
https://www.readbyqxmd.com/read/28184974/-causes-of-death-in-amyotrophic-lateral-sclerosis-results-from-the-rhineland-palatinate-als-registry
#17
J Wolf, A Safer, J C Wöhrle, F Palm, W A Nix, M Maschke, A J Grau
BACKGROUND: Amyotrophic lateral sclerosis (ALS) is associated with an increased mortality. Knowledge of possible causes of death could lead to an individualization of the palliative treatment concept and result in a differentiated palliative treatment pathway. Currently, only few systematic data are available on the heterogeneity of causes of death associated with ALS. OBJECTIVE: Analysis of the various causes of death in a prospective population-based German cohort of ALS patients...
February 9, 2017: Der Nervenarzt
https://www.readbyqxmd.com/read/28076984/percutaneous-endoscopic-gastrostomy-body-weight-loss-and-survival-in-amyotrophic-lateral-sclerosis-a-population-based-registry-study
#18
Antonio Fasano, Nicola Fini, Diana Ferraro, Laura Ferri, Marco Vinceti, Jessica Mandrioli
OBJECTIVE: To assess the role of percutaneous endoscopic gastrostomy (PEG) insertion, and its timing, on ALS survival, and to study prognostic factors of survival before and after PEG placement in a population-based setting. METHODS: In this observational population-based, registry study, we enrolled patients with newly- diagnosed ALS, according to the El Escorial revised criteria, who were resident in the Emilia Romagna Region, and who developed severe dysphagia needing enteral nutritional support...
January 11, 2017: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
https://www.readbyqxmd.com/read/28067943/gamma-aminobutyric-acid-gaba-modulators-for-amyotrophic-lateral-sclerosis-motor-neuron-disease
#19
REVIEW
Andrea Diana, Rita Pillai, Paolo Bongioanni, Aidan G O'Keeffe, Robert G Miller, Dan H Moore
BACKGROUND: Imbalance of gamma aminobutyric acid (GABA) and related modulators has been implicated as an important factor in the pathogenesis of amyotrophic lateral sclerosis (ALS), which is also known as motor neuron disease (MND). In this context, the role and mechanism of action of gabapentin and baclofen have been extensively investigated, although with conflicting results. This is the first systematic review to assess clinical trials of GABA modulators for the treatment of ALS. OBJECTIVES: To examine the efficacy of gabapentin, baclofen, or other GABA modulators in delaying the progression of ALS, and to evaluate adverse effects of these interventions SEARCH METHODS: On 16 August 2016, we searched the Cochrane Neuromuscular Specialised Register, Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, CINAHL Plus, AMED, and LILACS...
January 9, 2017: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/28009454/direct-estimation-for-adaptive-treatment-length-policies-methods-and-application-to-evaluating-the-effect-of-delayed-peg-insertion
#20
Xin Lu, Brent A Johnson
Dysphagia is a primary cause of death among patients diagnosed with amyotrophic lateral sclerosis (ALS), and percutaneous endoscopic gastrostomy (PEG) is a procedure to insert a tube into the stomach to assist or replace oral feeding. It is believed that PEG is beneficial and, generally, earlier insertion is preferable to later. However, gathering clinical evidence to support these beliefs on the use and timing of PEG is challenging because controlled clinical trials are not feasible and clinical endpoints are confounded with PEG in observational data...
December 23, 2016: Biometrics
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