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@ARTICLE{GrobeEinsler:155286,
author = {Grobe-Einsler, Marcus and Taheri Amin, Arian and Faber,
Jennifer and Schaprian, Tamara and Jacobi, Heike and
Schmitz-Hübsch, Tanja and Diallo, Alhassane and Tezenas du
Montcel, Sophie and Klockgether, Thomas},
title = {{D}evelopment of {SARA} home , a {N}ew {V}ideo‐{B}ased
{T}ool for the {A}ssessment of {A}taxia at {H}ome},
journal = {Movement disorders},
volume = {36},
number = {5},
issn = {1531-8257},
address = {New York, NY},
publisher = {Wiley},
reportid = {DZNE-2021-00566},
pages = {1242 - 1246},
year = {2021},
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.},
keywords = {Ataxia: diagnosis / Cerebellar Ataxia / Humans / Pilot
Projects / Prospective Studies / Severity of Illness Index /
Spinocerebellar Ataxias: diagnosis},
cin = {AG Klockgether / Patient studies, Bonn / AG Spottke},
ddc = {610},
cid = {I:(DE-2719)1011001 / I:(DE-2719)1011101 /
I:(DE-2719)1011103},
pnm = {353 - Clinical and Health Care Research (POF4-353)},
pid = {G:(DE-HGF)POF4-353},
experiment = {EXP:(DE-2719)SCA-20140101},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:33433030},
pubmed = {33433030},
doi = {10.1002/mds.28478},
url = {https://pub.dzne.de/record/155286},
}