期刊
JOURNAL OF NEUROLOGY NEUROSURGERY AND PSYCHIATRY
卷 88, 期 7, 页码 557-563出版社
BMJ PUBLISHING GROUP
DOI: 10.1136/jnnp-2016-314495
关键词
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资金
- Health Research Board Clinician Scientist Programme
- Baxalta
- Prinses Beatrix Spierfonds
- Netherlands ALS Foundation
- European Community's Health Seventh Framework Programme [259867]
- Netherlands Organization for Health Research and Development (Vici Scheme, JPND (SOPHIA, STRENGTH, ALSCare))
- Health Research Board Interdisciplinary Capacity Enhancement Programme
- European Community's Seventh Framework Programme (FP7) under the Health Cooperation programme
- project EUROMOTOR [259867]
- European Joint Programme in Neurodegeneration (SOPHIA and ALS-CarE)
- Charities Research Motor Neuron and Irish Motor Neuron Disease Association
- ESRC [ES/L008238/1] Funding Source: UKRI
- Economic and Social Research Council [ES/L008238/1] Funding Source: researchfish
- Medical Research Council [MR/L501529/1] Funding Source: researchfish
- Motor Neurone Disease Association [AlChalabi-Talbot/Apr14/926-794] Funding Source: researchfish
- National Institute for Health Research [NF-SI-0611-10084] Funding Source: researchfish
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.
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