Shared prognostic information in amyotrophic lateral sclerosis – systematic assessment of the patients’ perception of neurofilament light chain and the ALS functional rating scale
This study underscored the relevance of information about NfL and ALSFRS-R from the patient's perspective. Furthermore, patients proved to appreciate the relevance of this data for ALS research. Sharing information about NfL or ALSFRS-R was rarely perceived as burdensome even in a remote setting using the ALS app. These findings pave the way for further development of the patient-centered approach to sharing prognostic information in ALS.
Authors
- René Günther (ORCID: https://orcid.org/0000-0003-0329-5644)
- Patrick Weydt (ORCID: https://orcid.org/0000-0003-2344-5662)
- Petra Baum (ORCID: https://orcid.org/0000-0002-6926-4907)
- Christoph Münch (ORCID: https://orcid.org/0000-0001-9603-0623)
- Bettina Göricke
- Paul Lingor (ORCID: https://orcid.org/0000-0001-9362-7096)
- Thomas Meyer (ORCID: https://orcid.org/0000-0002-2736-7350)
- Jochen Hans Weishaupt (ORCID: https://orcid.org/0000-0002-3399-9784)
- Matthias Boentert (ORCID: https://orcid.org/0000-0001-6133-1397)
- André Maier (ORCID: https://orcid.org/0000-0003-2473-4116)
- Torsten Grehl (ORCID: https://orcid.org/0000-0002-0631-6976)
- Ute Weyen
- Julian Großkreutz (ORCID: https://orcid.org/0000-0001-9525-1424)
- Isabell Cordts (ORCID: https://orcid.org/0000-0002-2078-1997)
- Johannes Dorst (ORCID: https://orcid.org/0000-0001-6352-0909)
- Susanne Petri
- Lukas Maximilian Möhwald
Institutions
- University of Bonn (DE)
- Universität Ulm (DE)
- Heidelberg University (DE)
- German Center for Neurodegenerative Diseases (DE)
- University Hospital Heidelberg (DE)
- TUM Klinikum (DE)
- Medizinische Hochschule Hannover (DE)
- Ambulatory Rehabilitation Center Berlin Adlershof (DE)
- University Hospital Münster (DE)
- Universitätsmedizin Göttingen (DE)
- University Hospital Leipzig (DE)
- BG University Hospital Bergmannsheil Bochum (DE)
- Alfried Krupp Hospital (DE)
- Technical University of Munich (DE)
- Technische Universität Dresden (DE)
- Charité - Universitätsmedizin Berlin (DE)
- University of Lübeck (DE)
Publication Details
- Journal
- Neurological Research and Practice
- Published
- 2025-02-05
- DOI
- https://doi.org/10.1186/s42466-024-00363-y
- Citations
- 2
- Primary Topic
- Amyotrophic Lateral Sclerosis Research
- Type
- article
- Field-Weighted Citation Impact
- 2.78
Funders
- Universität Leipzig