title: The changing picture of amyotrophic lateral sclerosis: lessons from European registers.
abstract: Prospective population based-registers of amyotrophic lateral sclerosis (ALS) have operated in Europe for over two decades, and have provided important insights into our understanding of ALS. Here, we review the benefits that population registers have brought to the understanding of the incidence, prevalence, phenotype and genetics of ALS and outline the core operating principles that underlie these registers and facilitate international collaboration. Going forward, we offer lessons learned from our collective experience of operating population-based ALS registers in Europe for over two decades, focusing on register design, maintenance, identification and management of bias and the value of cross-national harmonisation and integration.
authors.affiliation: Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College, Dublin, Ireland.|Department of Neurology, Beaumont Hospital, Beaumont, Ireland.
authors.forename: Orla
authors.initials: O
authors.lastname: Hardiman
authors.affiliation: Department of Basic and Clinical Neuroscience, Maurice Wohl Clinical Neuroscience Institute, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
authors.forename: Ammar
authors.initials: A
authors.lastname: Al-Chalabi
authors.affiliation: Cambridge Institute of Public Health, University of Cambridge School of Clinical Medicine, Cambridge, United Kingdom.
authors.forename: Carol
authors.initials: C
authors.lastname: Brayne
authors.affiliation: Neurological Diseases Laboratory, Department of Neurosciences, IRCCS Mario Negri, Milano, Italy.
authors.forename: Ettore
authors.initials: E
authors.lastname: Beghi
authors.affiliation: Department of Neurology, Rudolf Magnus Institute of Neuroscience, University Medical Center Utrecht, Utrecht, The Netherlands.
authors.forename: Leonard H
authors.initials: LH
authors.lastname: van den Berg
authors.affiliation: Department of Neurosciences, University of Turin, Turin, Italy.
authors.forename: Adriano
authors.initials: A
authors.lastname: Chio
authors.affiliation: Department of Basic and Clinical Neuroscience, Maurice Wohl Clinical Neuroscience Institute, Institute of Psychiatry, Psychology and Neuroscience, King's College London, London, UK.
authors.forename: Sarah
authors.initials: S
authors.lastname: Martin
authors.affiliation: Department of Neuroscience, University of Bari, Bari, Italy.
authors.forename: Giancarlo
authors.initials: G
authors.lastname: Logroscino
authors.affiliation: Academic Unit of Neurology, Trinity Biomedical Sciences Institute, Trinity College, Dublin, Ireland.
authors.forename: James
authors.initials: J
authors.lastname: Rooney
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology* / Q000235:genetics*; D005006:Ethnicity; D005060:Europe / Q000453:epidemiology; D006801:Humans; D015994:Incidence; D010641:Phenotype; D011159:Population Surveillance; D015995:Prevalence; D011446:Prospective Studies; D012042:Registries / Q000706:statistics & numerical data*; D012307:Risk Factors
keywords: ALS; EPIDEMIOLOGY; MOTOR NEURON DISEASE; NEUROEPIDEMIOLOGY