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| 001 | 165183 | ||
| 005 | 20250127111050.0 | ||
| 024 | 7 | _ | |a 10.1080/21678421.2022.2104649 |2 doi |
| 024 | 7 | _ | |a pmid:35912984 |2 pmid |
| 024 | 7 | _ | |a 1466-0822 |2 ISSN |
| 024 | 7 | _ | |a 1471-180X |2 ISSN |
| 024 | 7 | _ | |a 1748-2968 |2 ISSN |
| 024 | 7 | _ | |a 2167-8421 |2 ISSN |
| 024 | 7 | _ | |a 2167-9223 |2 ISSN |
| 024 | 7 | _ | |a altmetric:133737119 |2 altmetric |
| 037 | _ | _ | |a DZNE-2022-01485 |
| 041 | _ | _ | |a English |
| 082 | _ | _ | |a 610 |
| 100 | 1 | _ | |a Meyer, Thomas |b 0 |
| 245 | _ | _ | |a Remote digital assessment of amyotrophic lateral sclerosis functional rating scale - a multicenter observational study. |
| 260 | _ | _ | |a Abingdon |c 2023 |b Taylor Francis Group |
| 336 | 7 | _ | |a article |2 DRIVER |
| 336 | 7 | _ | |a Output Types/Journal article |2 DataCite |
| 336 | 7 | _ | |a Journal Article |b journal |m journal |0 PUB:(DE-HGF)16 |s 1683033017_12618 |2 PUB:(DE-HGF) |
| 336 | 7 | _ | |a ARTICLE |2 BibTeX |
| 336 | 7 | _ | |a JOURNAL_ARTICLE |2 ORCID |
| 336 | 7 | _ | |a Journal Article |0 0 |2 EndNote |
| 520 | _ | _ | |a Remote 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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| 588 | _ | _ | |a Dataset connected to CrossRef, PubMed, , Journals: pub.dzne.de |
| 650 | _ | 7 | |a ALS-App |2 Other |
| 650 | _ | 7 | |a Amyotrophic lateral sclerosis |2 Other |
| 650 | _ | 7 | |a amyotrophic lateral sclerosis functional rating scale-revised |2 Other |
| 650 | _ | 7 | |a remote assessment |2 Other |
| 650 | _ | 7 | |a self-assessment |2 Other |
| 650 | _ | 2 | |a Persons with Disabilities |2 MeSH |
| 650 | _ | 2 | |a Humans |2 MeSH |
| 650 | _ | 2 | |a Male |2 MeSH |
| 650 | _ | 2 | |a Female |2 MeSH |
| 650 | _ | 2 | |a Amyotrophic Lateral Sclerosis: diagnosis |2 MeSH |
| 650 | _ | 2 | |a Disabled Persons |2 MeSH |
| 650 | _ | 2 | |a Germany |2 MeSH |
| 650 | _ | 2 | |a Disease Progression |2 MeSH |
| 700 | 1 | _ | |a Spittel, Susanne |b 1 |
| 700 | 1 | _ | |a Grehl, Torsten |b 2 |
| 700 | 1 | _ | |a Weyen, Ute |b 3 |
| 700 | 1 | _ | |a Steinbach, Robert |b 4 |
| 700 | 1 | _ | |a Kettemann, Dagmar |b 5 |
| 700 | 1 | _ | |a Petri, Susanne |b 6 |
| 700 | 1 | _ | |a Weydt, Patrick |0 P:(DE-2719)9001116 |b 7 |u dzne |
| 700 | 1 | _ | |a Günther, René |0 P:(DE-2719)2811849 |b 8 |u dzne |
| 700 | 1 | _ | |a Baum, Petra |b 9 |
| 700 | 1 | _ | |a Schlapakow, Elena |b 10 |
| 700 | 1 | _ | |a Koch, Jan Christoph |b 11 |
| 700 | 1 | _ | |a Boentert, Matthias |b 12 |
| 700 | 1 | _ | |a Wolf, Joachim |b 13 |
| 700 | 1 | _ | |a Grosskreutz, Julian |b 14 |
| 700 | 1 | _ | |a Rödiger, Annekathrin |b 15 |
| 700 | 1 | _ | |a Ilse, Benjamin |b 16 |
| 700 | 1 | _ | |a Metelmann, Moritz |b 17 |
| 700 | 1 | _ | |a Norden, Jenny |b 18 |
| 700 | 1 | _ | |a Koc, Ruhan Yasemin |b 19 |
| 700 | 1 | _ | |a Körtvelyessy, Peter |0 P:(DE-2719)2812030 |b 20 |u dzne |
| 700 | 1 | _ | |a Riitano, Alessio |b 21 |
| 700 | 1 | _ | |a Walter, Bertram |b 22 |
| 700 | 1 | _ | |a Hildebrandt, Barbara |b 23 |
| 700 | 1 | _ | |a Schaudinn, Friedrich |b 24 |
| 700 | 1 | _ | |a Münch, Christoph |b 25 |
| 700 | 1 | _ | |a Maier, André |b 26 |
| 773 | _ | _ | |a 10.1080/21678421.2022.2104649 |g p. 1 - 10 |0 PERI:(DE-600)2705061-0 |n 3-4 |p 175-184 |t Amyotrophic lateral sclerosis & frontotemporal degeneration |v 24 |y 2023 |x 1466-0822 |
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