Population-based European data
What it is: The largest European collection on ataxic cerebral palsy, based on SCPE population-based cerebral palsy registries. (Visit SCPE website)
Purpose: To refine clinical criteria, associated syndrome, and neuroimaging classifications.
Why it matters: The SCPE population-based cerebral palsy registries are essential for understanding ataxic cerebral palsy. With their large coverage, long-term standardized data, and consistent case selection, they have enabled the largest description of ataxic cerebral palsy cases to date. The database, containing data from the 1976 birth cohort, and continues to grow.
Real-world data
What it is: Data from electronic health records and other health databases, standardized using common data models.
Purpose: To identify ataxic cerebral palsy patients and explore feasibility of using real-world databases for research.
Why it matters: Advances understanding of healthcare trajectories and supports participatory approaches to improve quality of care.
The ARTEMIS clinical study
What it is: A new clinical study, enrolling prospectively children aged 5–8 years with ataxic cerebral palsy, in seven European centers.
Purpose: To characterize impairment profiles, brain lesions, genetic results, quality of life and the disability impact on families
Why it matters: Provides detailed, multicenter, standardized clinical data to link function, imaging, and genetics.
