TY - JOUR T1 - The changing picture of amyotrophic lateral sclerosis: lessons from European registers JF - Journal of Neurology, Neurosurgery & Psychiatry JO - J Neurol Neurosurg Psychiatry DO - 10.1136/jnnp-2016-314495 SP - jnnp-2016-314495 AU - Orla Hardiman AU - Ammar Al Chalabi AU - Carol Brayne AU - Ettore Beghi AU - Leonard H van den Berg AU - Adriano Chio AU - Sarah Martin AU - Giancarlo Logroscino AU - James Rooney Y1 - 2017/03/10 UR - http://jnnp.bmj.com/content/early/2017/03/10/jnnp-2016-314495.abstract N2 - 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. ER -