Chiari malformation corresponds to the herniation of cerebellar tonsils into the foramen magnum resulting in obstruction of cerebrospinal fluid circulation, which may eventually lead to the formation of an intramedullary cavity called syringomyelia. Chiari and syringomyelia can be responsible of variable symptoms, based on which neurosurgeons might propose surgical treatment. Yet, there is no properly developped and validated patient reported outcome measure (PROM) to assess the clinical severity of Chiari malformation and/or syringomyelia. The lack of such evaluation tool is a major issue to determine the optimal therapeutic strategy and to achieve a standardized and reproducible follow-up.
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development of metrologic and psychometric features of a patient-reported outcome measure (BicĂŞtre Chiari and Syringomyelia score - BCS score)
Timeframe: throughout the study (an average of 26 months)
validation of metrologic and psychometric features of a patient-reported outcome
Timeframe: throughout the study (an average of 26 months)