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ALS Registry

R Tortelli, S Arcuti, M Copetti, R Barone, C Zecca, R Capozzo, M R Barulli, I L Simone, G Logroscino
OBJECTIVE: To evaluate whether the presence of pseudobulbar affect (PBA) in an early stage of the disease influences survival in a population-based incident cohort of amyotrophic lateral sclerosis (ALS). METHODS: Incident ALS cases, diagnosed according to El Escorial criteria, were enrolled from a prospective population-based registry in Puglia, Southern Italy. The Center for Neurologic Study-Lability Scale (CNS-LS), a self-administered questionnaire, was used to evaluate PBA...
March 11, 2018: Acta Neurologica Scandinavica
Angela Rosenbohm, Gabriele Nagel, Raphael S Peter, Torben Brehme, Wolfgang Koenig, Luc Dupuis, Dietrich Rothenbacher, Albert C Ludolph
Importance: Knowledge about the metabolic states of patients with amyotrophic lateral sclerosis (ALS) may provide a therapeutic approach. Objective: To investigate the association between the onset and prognosis of ALS and serum retinol-binding protein 4 (RBP4) concentration as a biomarker for insulin resistance and vitamin A metabolism. Design, Setting, and Participants: Case-control design for risk factors of ALS; cohort design for prognostic factors within ALS cases...
February 26, 2018: JAMA Neurology
Jessica Mandrioli, Sara Angela Malerba, Ettore Beghi, Nicola Fini, Antonio Fasano, Elisabetta Zucchi, Silvia De Pasqua, Carlo Guidi, Emilio Terlizzi, Elisabetta Sette, Alessandro Ravasio, Mario Casmiro, Fabrizio Salvi, Rocco Liguori, Lucia Zinno, Yasmin Handouk, Romana Rizzi, Annamaria Borghi, Rita Rinaldi, Doriana Medici, Mario Santangelo, Enrico Granieri, Vittoria Mussuto, Marina Aiello, Salvatore Ferro, Marco Vinceti
OBJECTIVE: In this prospective population-based registry study on ALS survival, we investigated the role of riluzole treatment, together with other clinical factors, on the prognosis in incident ALS cases in Emilia Romagna Region (ERR), Italy. METHODS: A registry for ALS has been collecting all incident cases in ERR since 2009. Detailed clinical data from all patients diagnosed with ALS between 1.1.2009 and 31.12.2014 have been analyzed for this study, with last follow up date set at 31...
February 5, 2018: Journal of Neurology
Angela Rosenbohm, Mingsheng Liu, Gabriele Nagel, Raphael S Peter, Bo Cui, Xiaoguang Li, Jan Kassubek, Dietrich Rothenbacher, Dorothée Lulé, Liying Cui, Albert C Ludolph
OBJECTIVE: The aim of this study is to explore phenotypical differences of amyotrophic lateral sclerosis (ALS) between two cohorts from Germany and China. METHODS: Registry-based studies of ALS were conducted in South-West Germany from 2010 to 2014 and an ALS clinic in Beijing from 2013 to 2016, respectively. Demographic and clinical features of 663 German and 276 Chinese ALS patients were collected and compared. RESULTS: Mean age-at-onset was higher in German than in Chinese ALS patients [66...
February 1, 2018: Journal of Neurology
Òscar Miró, Melissa Hazlitt, Xavier Escalada, Pere Llorens, Víctor Gil, Francisco Javier Martín-Sánchez, Pia Harjola, Verónica Rico, Pablo Herrero-Puente, Javier Jacob, David C Cone, Martin Möckel, Michael Christ, Yonathan Freund, Salvatore di Somma, Said Laribi, Alexandre Mebazaa, Veli-Pekka Harjola
OBJECTIVE: Little is known about treatments provided by advanced life support (ALS) ambulance teams to patients with acute heart failure (AHF) during the prehospital phase, and their influence on short-term outcome. We evaluated the effect of prehospital care in consecutive patients diagnosed with AHF in Spanish emergency departments (EDs). METHODS: We selected patients from the EAHFE registry arriving at the ED by ALS ambulances with available follow-up data. We recorded specific prehospital ALS treatments (supplemental oxygen, diuretics, nitroglycerin, non-invasive ventilation) and patients were grouped according to whether they received low- (LIPHT; 0/1 treatments) or high-intensity prehospital therapy (HIPHT; > 1 treatment) for AHF...
December 28, 2017: Clinical Research in Cardiology: Official Journal of the German Cardiac Society
Phichet Nongchang, Wongsa Laohasiri Wong, Somsak Pitaksanurat, Pairoj Boonsirik Amchai
Introduction: Out of Hospital Cardiac Arrest (OHCA) is a leading cause of death worldwide. The Emergency Medical Service (EMS) provides early care to critical OHCA patients. Pre hospital intervention has been improving OHCA survival rate, however it is still unclear for the recommendation of routine infusion of Intravenous (IV) fluids during cardiac arrest resuscitation. Aim: This study aimed to determine whether IV fluid administration was associated with increasing survival of resuscitated OHCA patients and to assess the survival rate of resuscitated OHCA patients...
September 2017: Journal of Clinical and Diagnostic Research: JCDR
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
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 score on the Revised ALS Functional Rating Scale...
November 1, 2017: American Journal of Epidemiology
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
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
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
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
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
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
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
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
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
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
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
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
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