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000279889 0247_ $$2doi$$a10.6084/M9.FIGSHARE.20411363
000279889 0247_ $$2doi$$a10.6084/m9.figshare.20411363
000279889 037__ $$aDZNE-2025-00856
000279889 1001_ $$aMeyer, Thomas$$b0
000279889 245__ $$aRemote digital assessment of amyotrophic lateral sclerosis functional rating scale – a multicenter observational study
000279889 260__ $$bTaylor & Francis$$c2022
000279889 3367_ $$2BibTeX$$aMISC
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000279889 520__ $$aRemote self-assessment of the revised amyotrophic lateral sclerosis functional rating scale (ALSFRS-R) using digital data capture was investigated for its feasibility as an add-on to ALSFRS-R assessments during multidisciplinary clinic visits. From August 2017 to December 2021, at 12 ALS centers in Germany, an observational study on remote assessment of the ALSFRS-R was performed. In addition to the assessment of ALSFRS-R during clinic visits, patients were offered a digital self-assessment of the ALSFRS-R – either on a computer or on a mobile application (“ALS-App”). An estimated multicenter cohort of 4,670 ALS patients received care at participating ALS centers. Of these patients, 971 remotely submitted the ALSFRS-R, representing 21% of the multicenter cohort. Of those who opted for remote assessment, 53.7% ( n = 521) completed a minimum of 4 ALSFRS-R per year with a mean number of 10.9 assessments per year. Different assessment frequencies were found for patients using a computer (7.9 per year, n = 857) and mobile app (14.6 per year, n = 234). Patients doing remote assessments were more likely to be male and less functionally impaired but many patients with severe disability managed to complete it themselves or with a caregiver (35% of remote ALSFRS-R cohort in King’s Stage 4). In a dedicated ALS center setting remote digital self-assessment of ALSFRS-R can provide substantial data which is complementary and potentially an alternative to clinic assessments and could be used for research purposes and person-level patient management. Addressing barriers relating to patient uptake and adherence are key to its success.
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000279889 650_7 $$2Other$$aCell Biology
000279889 650_7 $$2Other$$aEnvironmental Sciences not elsewhere classified
000279889 650_7 $$2Other$$aBiological Sciences not elsewhere classified
000279889 650_7 $$2Other$$aDevelopmental Biology
000279889 650_7 $$2Other$$aScience Policy
000279889 650_7 $$2Other$$aMental Health
000279889 650_7 $$2Other$$aHematology
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000279889 7001_ $$aSpittel, Susanne$$b1
000279889 7001_ $$aGrehl, Torsten$$b2
000279889 7001_ $$aWeyen, Ute$$b3
000279889 7001_ $$aSteinbach, Robert$$b4
000279889 7001_ $$aKettemann, Dagmar$$b5
000279889 7001_ $$aPetri, Susanne$$b6
000279889 7001_ $$0P:(DE-2719)9001116$$aWeydt, Patrick$$b7$$udzne
000279889 7001_ $$0P:(DE-2719)2811849$$aGünther, René$$b8$$udzne
000279889 7001_ $$aBaum, Petra$$b9
000279889 7001_ $$aSchlapakow, Elena$$b10
000279889 7001_ $$aKoch, Jan Christoph$$b11
000279889 7001_ $$aBoentert, Matthias$$b12
000279889 7001_ $$aWolf, Joachim$$b13
000279889 7001_ $$aGrosskreutz, Julian$$b14
000279889 7001_ $$aRödiger, Annekathrin$$b15
000279889 7001_ $$aIlse, Benjamin$$b16
000279889 7001_ $$aMetelmann, Moritz$$b17
000279889 7001_ $$aNorden, Jenny$$b18
000279889 7001_ $$aKoc, Ruhan Yasemin$$b19
000279889 7001_ $$0P:(DE-2719)2812030$$aKörtvelyessy, Peter$$b20$$udzne
000279889 7001_ $$aRiitano, Alessio$$b21
000279889 7001_ $$aWalter, Bertram$$b22
000279889 7001_ $$aHildebrandt, Barbara$$b23
000279889 7001_ $$aSchaudinn, Friedrich$$b24
000279889 7001_ $$aMünch, Christoph$$b25
000279889 7001_ $$aMaier, André$$b26
000279889 773__ $$a10.6084/m9.figshare.20411363
000279889 7870_ $$0DZNE-2022-01485$$aMeyer, Thomas et.al.$$dAbingdon : Taylor Francis Group, 2023$$iRelatedTo$$r$$tRemote digital assessment of amyotrophic lateral sclerosis functional rating scale - a multicenter observational study.
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000279889 9101_ $$0I:(DE-588)1065079516$$6P:(DE-2719)2811849$$aDeutsches Zentrum für Neurodegenerative Erkrankungen$$b8$$kDZNE
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