Journal Article

DZNE-2021-00566

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Development of SARA home , a New Video‐Based Tool for the Assessment of Ataxia at Home

Grobe-Einsler, M. (First author)DZNE* ; Taheri Amin, A.DZNE* ; Faber, J.DZNE* ; Schaprian, T.DZNE* ; Jacobi, H.DZNE* ; Schmitz-Hübsch, T. ; Diallo, A. ; Tezenas du Montcel, S. ; Klockgether, T. (Last author)DZNE*

2021
Wiley New York, NY

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Please use a persistent id in citations: doi:10.1002/mds.28478

Abstract: BackgroundClinical 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.MethodsBased 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.ResultsSARAhome extracted from the EUROSCA baseline data was highly correlated with conventional SARA (r = 0.9854, P < 0.0001). In the prospective validation study, the SARAhome was highly correlated with the conventional SARA (r = 0.9254, P < 0.0001). Five of 12 participants of the pilot study obtained a complete set of 28 evaluable videos. Seven participants obtained 13–27 videos. The intraindividual differences between the lowest and highest SARAhome scores ranged from 1 to 5.5.ConclusionThe SARAhome and the conventional SARA are highly correlated. Application at home is feasible. There was a considerable degree of intraindividual variability of the SARAhome scores.

Keyword(s): Ataxia: diagnosis (MeSH) ; Cerebellar Ataxia (MeSH) ; Humans (MeSH) ; Pilot Projects (MeSH) ; Prospective Studies (MeSH) ; Severity of Illness Index (MeSH) ; Spinocerebellar Ataxias: diagnosis (MeSH)

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Contributing Institute(s):

1. Clinical Research Coordination (AG Klockgether)
2. Patient Studies (Patient studies, Bonn)
3. Clinical Trial Unit (AG Spottke)

Research Program(s):

1. 353 - Clinical and Health Care Research (POF4-353) (POF4-353)

Experiment(s):

1. Registry for Spinocerebellar Ataxies

Appears in the scientific report 2021

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Database coverage:
; ; ; Clarivate Analytics Master Journal List ; Current Contents - Clinical Medicine ; Current Contents - Life Sciences ; DEAL Wiley ; Ebsco Academic Search ; Essential Science Indicators ; IF >= 5 ; JCR ; Nationallizenz ; SCOPUS ; Science Citation Index Expanded ; Web of Science Core Collection

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