Validation of a Clinical Assessment Scale Specific to Alternating Hemiplegia

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

17 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-11-18

Study Completion Date

2023-11-19

Brief Summary

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Alternating Hemiplegia of Childhood (AHC) is a very rare neurological disorder of genetic origin, combining paroxysmal episodes and neurodevelopmental impairment. The disease is generally sporadic, and its incidence has been estimated at 1 in 100,000 births, with around 500 cases published worldwide. The true prevalence of AHC may be underestimated due to a lack of understanding of the disease and a high degree of phenotypic heterogeneity.

It should be noted that, to date, it is difficult to assess the clinical characteristics of AHC patients in a homogeneous way. The lack of disease-specific clinical outcome measures therefore constitutes a critical node for advancing AHC research. In addition, recognition of the pattern of movement disorders and the ability to classify their severity are very important and useful for the clinician. Homogeneous disease assessment will help plan rehabilitative and pharmacological interventions, facilitate monitoring of treatment outcomes, and predict prognosis.

This is why an AHC assessment scale have been developed in collaboration with clinical teams from the IAHCRC consortium.

The scale has already been tested and validated on Italian and Spanish patients. The aim of this study is therefore to validate the use of this same scale on our French population of AHC patients. The hypothesis of the study is that the practical use of this scale specific to alternating hemiplegia is reproducible. To this end, all the items on the scale will be scored independently for each patient by 4 neuropediatricians with expertise in the disease, in order to observe the reproducibility of the results obtained with this scale. The scale will be used for twenty AHC patients of all ages.

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Detailed Description

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Conditions

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Alternating Hemiplegia

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Study Groups

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Patients with alternating hemiplegia

Patients with alternating hemiplegia, from 0 to 99 years old

interview with neurologist

Intervention Type OTHER

interview with neurologist

Interventions

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interview with neurologist

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Patient with confirmed diagnosis of AHC, unrestricted age range 0-99 years
* At least one parent and/or legal guardian who understands and speaks the national language

Adult patients :

* Gathering of the non-opposition of the patient and/or his legal representative

Minor patients :

* Collection of non-opposition from parents/guardians