Work Package 2: Data Collection and Collation
Interrogation & Integration of Extant Data & New Data Acquisition
The objective of Work Package 2 is to collate a pan-European, population-based dataset of ALS and generate an early prototype ICT Platform
Participating sites within the TRICALS Consortium in Ireland, the United Kingdom, the Netherlands, Belgium, Sweden, Italy, France, and Spain have already established population-based Registers within their own countries, and have generated detailed datasets relating to genomics, patient journey, and predictors of survival. Under appropriate data-sharing agreements, these data are suitable for detailed collated analysis. Clinical data will be integrated with genomic data to provide insights into the effects of known genomic variants on ALS. The data will also be interrogated to define key clinical data for future data collection and to identify predictors of disease progression.
Based on an agreed harmonised strategy, standardised data will be collected prospectively from consenting individuals as they attend specialist ALS clinics at TRICALS sites. This dataset will include demographic, clinical, socio-economic, and resource use data. These data can then be linked to separate studies on genetics, biosamples, and more. The prospective collection of data will guarantee access to a harmonised and up-to-date dataset for researchers to interrogate effectively.
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Leader: Prof. Orla Hardiman