Project: NETCALS (Network of Cohort Assessment in ALS)

Amyotrophic Lateral Sclerosis is one of the most devastating diseases in neurology. Differential phenotypic and genetic observations indicate that ALS should no longer be considered a single disease entity. A major challenge in ALS research will be to identify different subgroups of patients based on specific (combinations of) phenotypic, genetic, environmental or lifestyle characteristics or molecular CSF/peripheral blood biomarker, neuroimaging (= marker for upper motor neuron degeneration) and neurophysiological (= marker for lower motor neuron degeneration) data. Only transnational collaborations of ALS centres will be able to create a sample size with sufficient power to analyse multiple layers of data. The community-led Working Group ‘NETCALS’ will focus on establishing pan-European ‘best practice’ guidelines and a methodological framework for data sharing/handling, cognitive/functional outcome measures (including training+certification), standards for neuro-imaging/neurophysiology, and clinical data linkage in population-based cohorts of ALS patients and presymptomatic gene carriers, with the ultimate goals to increase sample size and to enable integration of multi-layer data sets. These deliverables will be of great value to overcome barriers to research in on-going and future patient cohort studies. NETCALS consists of 12 country members (of which 6 JPND Working Groups call participants), reflecting an impressive collective experience of key European ALS clinician scientists, and an internationally recognised expertise in all relevant research areas with a proven track record in successful international collaboration in multiple large international (FP7, JPND, community-led) studies. The Working Group will be supported by an Advisory Reference Group, composed of experts in the fields of Alzheimer’s, Parkinson’s and Huntington’s disease as well as ALS experts from non-JPND countries, to ensure that objectivity is maintained in drawing conclusions and to support efficient dissemination of results to the wider ALS community and other areas of neurodegenerative diseases.

Acronym JPNDWG00482 (Reference Number: JPNDWG00482)
Duration 01/01/2014 - 01/01/2015
Project Topic Neurodegenerative disease
Website visit project website
Network JPND
Call A Call for Proposals for Working Groups to Inform Cohort Studies in Neurodegenerative Disease Research

Project partner

Number Name Role Country
1 University Medical Center Utrecht Coordinator Netherlands