Consortium of experts
Pathophysiological mechanisms remain poorly understood. In this context, it is essential to gather new data to better understand the origins of non-progressive congenital ataxia/ataxic cerebral palsy, predict its natural course and measure its impact, by combining analysis of clinical features, systematic study of brain images and advanced genomic testing. Our consortium was set up to achieve these objectives.
Context & unmeet needs
There is a need :
To harmonize diagnostic procedures in ataxic cerebral palsy to increase the chances for targeted therapies
To harmonize the reporting of ataxic cerebral palsy in population-based registries to better meet epidemiological purposes.
To understand health care utilization and to document health care trajectories to optimize care.
To further investigate evidence for a genetic origin by combining data on phenomenology, brain imaging and genetic testing.
To better understand the impairment profile and special needs of these children to optimize care, improve their quality of life and reduce the impact on their families.
Ambition of the project
Identification
01
Enhance the application of clinical criteria by refining training instruments to allow a more reliable identification of patients.
Neuroimaging classification
02
Develop a detailed neuroimaging classification of brain MRI findings with better identification of patterns suggestive for acquired or genetic background.
Genetic component
03
Identify indicators for a genetic background and improve candidate gene prioritization.
Comprehensive description
04
Refine phenotyping for ataxic cerebral palsy and assess children’s quality of life.
Healthcare use
05
Report on the benefits of using real-world databases and studying healthcare trajectories to improve understanding of ataxic cerebral palsy.
Ataxic CP databases
06
Make European data on ataxic cerebral palsy Findable, Accessible, Interoperable and Reusable.
The ARTEMIS programme will build on three unique data sources:
Register data
The project will harness the full potential of the most important population-based European collection currently available on ataxic cerebral palsy and fine-tune clinical criteria and definitions, syndromes and neuroimaging classifications.
Research data
New prospectively collected data will allow to characterize in more detail the impairment profile and assess the quality of life of children with ataxic cerebral palsy aged 5 to 8 years at data collection.
Real-world data
A complementary perspective will use real-world data to advance knowledge of health-care trajectories, with expected benefits in engaging patients and professionals in a participatory approach to improve the quality of care.
The project in numbers
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Partners
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Patient Advocacy Organization
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Partners and organizations
Coordination
Partners
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Contributing networks of experts
Patient Advocacy Organization
News
Project Updates
The ARTEMIS clinical study was officially registered on 28 October 2025 in the UK clinical study registry ISRCTN. The first enrollments can now begin!
Research Highlights
The ARTEMIS project was proudly showcased at the 2025 European Academy of Childhood-onset Disability (EACD) Congress in Heidelberg
Consortium Activities
The ARTEMIS consortium held its annual meeting to mark the end of the project’s first year.