SARAhome is a digital assessment of ataxia at home. Ataxias are a heterogeneous group of rare movement disorders and the core clinical features of these disorders are progressive gait disturbance, impaired coordination and speech disturbance.
Aparito documented the story behind the development of SARAhome by Dr Marcus Grobe-Einsler MD and the team at Deutsches Zentrum für Neurodegenerative Erkrankungen e.V. and below is an extract from the paper that led to this breakthrough!
Background
Clinical scales such as the Scale for the Assessment and Rating of Ataxia (SARA) cannot be used to study ataxia at home or to assess daily fluctuations.
The objective of the current study was to develop a video-based instrument, SARAhome, for measuring ataxia severity easily and independently at home.
Methods
Based on feasibility of self-application, we selected 5 SARA items (gait, stance, speech, nose-finger test, fast alternating hand movements) for SARAhome (range, 0–28). We compared SARAhome items with total SARA scores in 526 patients with spinocerebellar ataxia types 1, 2, 3, and 6 from the EUROSCA natural history study.
To prospectively validate the SARAhome, we directly compared the self-applied SARAhome and the conventional SARA in 50 ataxia patients.
To demonstrate feasibility of independent home recordings in a pilot study, 12 ataxia patients were instructed to obtain a video each morning and evening over a period of 14 days.
All videos were rated offline by a trained rater.
Authors: Marcus Grobe-Einsler, Arian Taheri Amin Jennifer Faber, Tamara Schaprian, Heike Jacobi, Tanja Schmitz-Hübsch, Alhassane Diallo, Sophie Tezenas du Montcel, Thomas Klockgether