Annual meeting 2014

Annual meeting 2014

On 6 & 7 October the annual SOPHIA meeting will be held in London, UK, together with the annual meetings of 3 other JPND-consortia (STRENGTH, ALS-CarE and NEEDS in ALS). The meeting agenda can be found here.

Annual meeting 2013

Annual meeting 2013

In September 2013 the SOPHIA consortium members gathered for the annual meeting in Amsterdam. Please find the notes from that meeting here.

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The SOPHIA group is validating the Edinburgh Cognitive and Behavioural ALS Screen or ECAS as developed by Dr. Sharon Abrahams. Early results were presented at the recent ENCALS meeting in Milan, Italy.

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SOPHIA partners

The SOPHIA consortium has 16 members spread all over Europe. The members meet annually to present and discuss the progress of the several workpackages and how to keep pace moving forward.

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Welcome to the website of SOPHIA, the European project for ‘Sampling and biomarker OPtimization and Harmonization In ALS and other motor neuron diseases’

SOPHIA is a consortium of 17 ALS centres in Europe, and recognises the urgent need to develop biomarkers to expedite diagnosis, characterize disease burden and to predict disease course for neurodegenerative diseases, and specifically for amyotrophic lateral sclerosis (ALS).


SOPHIA aims to fulfil this need by the development of:

  • A common strategy for the prioritization and selection of biomarker candidates to be optimized and/or harmonized
  • A pan-European methodology to perform optimization and harmonization of these biomarkers
  • An infrastructure strategy that identifies existing collaborative structures that are relevant to the optimization and harmonization of biomarkers for neurodegenerative diseases, including academic (trans)national initiatives, co-funding strategies, biobanks, industrial efforts, private-public alliances, etc.

Work process

Within SOPHIA several dedicated work packages have been defined:

  • WP1 relates to the optimization and harmonization of data management: A web-based platform incorporating a virtual biobank will be established to integrate core clinical data with biomarker datasets and sample/tissue tracking from patients from all participating centres. Standard operating procedures (SOPs) for the collection and storage of biological samples (blood, CSF, etc.) and tissues (CNS, etc.) will be developed.
  • WP2 focuses on the optimization and harmonization of biosampling (blood, CSF) and improvement of the evaluation of potential diagnostic and prognostic molecular biomarkers, not just classical protein assays but also microarray technology (chromosomal and genetic aberrations).
  • WP3 aims to optimize and harmonize imaging and neurophysiologic biomarkers, and to develop MRI and MUNIX techniques as widely applicable surrogate markers of disease stage and progression and as markers of therapeutic response in future drug trials.
  • WP4 is dedicated to the two-way communication with the entire ALS/ND field, to ensure that all input is acquired for efficient and effective optimization, and that all results are effectively disseminated for use within the wider neurodegenerative diseases field.
  • WP5 entails overall project management.


Amyotrophic Lateral Sclerosis (ALS) is one of the most devastating diseases in neurology affecting some 50,000 individuals at any time in Europe, and causing around 10.000 deaths each year. The motor system (upper motor neurons in the motor cortex and lower motor neurons in the spinal cord) is preferentially affected, but there is an overlap with frontotemporal dementia (FTD). ALS represents a good model for study of all neurodegenerative conditions, as it has a characteristic phenotype, rapid progression and the correlation between diagnosis during life and autopsy diagnosis is close to 100%. However, validated neurochemical biomarkers for monitoring disease activity, earlier diagnosis and defining prognosis are lacking. Active European collaborations are in place for harmonizing clinical datasets, neuroimaging and neuropathology protocols. A preliminary strategy for harmonization of biological and tissue samples has been established. Standardized protocols for clinical data and sample collection are now urgently required for optimization and harmonization of biomarker development.


SOPHIA is a project funded through the EU Joint Programme – Neurodegenerative Disease Research (JPND), the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. JPND aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases.

SOPHIA is funded through the EU Joint Programme – Neurodegenerative Disease Research (JPND)

Next meeting

The 2015 SOPHIA meeting will be a joint JPND ALS projects meeting in September/October, more details will follow nearer the time