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.
- MOTOR NEURON DISEASE
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Funding OH is funded by the Health Research Board Clinician Scientist Programme. Prof Hardiman has received speaking honoraria from Novarits, Biogen Idec, Sanofi Aventis and Merck- Serono. She has been a member of advisory panels for Biogen Idec, Allergen, Ono Pharmaceuticals, Novartis, Cytokinetics and Sanofi Aventis. She serves as Editor-in-Chief of Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. AAC declares associations with OrionPharma, Cytokinetics, Mitsubishi-Tanabe Pharma, OneWorld Publications and Cold Spring Harbor Laboratory Press. CB declares no conflicts of interest. EB reports grants from UCB-Pharma, grants from Shire, grants from EISAI, personal fees from Viropharma, grants from Italian Ministry of Health, grants from European Union, grants from Fondazione Borgonovo, grants from Associazione IDIC 15, outside the submitted work. LHB serves on scientific advisory boards for the Prinses Beatrix Spierfonds, Thierry Latran Foundation, Biogen and Cytokinetics; received an educational grant from Baxalta; serves on the editorial board of Amyotrophic Lateral Sclerosis And Frontotemporal Degeneration and the Journal of Neurology, Neurosurgery, and Psychiatry; and receives research support from the Prinses Beatrix Spierfonds, Netherlands ALS Foundation, The European Community's Health Seventh Framework Programme (grant agreement n° 259867), The Netherlands Organization for Health Research and Development (Vici Scheme, JPND (SOPHIA, STRENGTH, ALSCare)).
Funding The research leading to these results has received funding from the Health Research Board Interdisciplinary Capacity Enhancement Programme, the European Community’s Seventh Framework Programme (FP7/2007-2013) under the Health Cooperation programme and the project EUROMOTOR (number 259867), from the European Joint Programme in Neurodegeneration (SOPHIA and ALS-CarE), and the Charities Research Motor Neuron and Irish Motor Neuron Disease Association. The funding sources played no role in the preparation of this manuscript.
Provenance and peer review Commissioned; externally peer reviewed.
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