Examining changing working status and caregiver assistance in amyotrophic lateral sclerosis (ALS) using large-scale European databases as part of PRECISION-ALS
Up to 45% of plwALS are working prior to diagnosis and their working status changes rapidly, taking an average of 12 months to leave the workforce. Caregiver input increases over time, proportional to ALSFRS-R score. Caregivers are primarily spouses and children. Further work is needed to comprehensively capture this information and calculate its true socioeconomic impact.
Authors
- Carlos Pastor‐Vargas (ORCID: https://orcid.org/0000-0002-4678-7967)
- Miriam Galvin (ORCID: https://orcid.org/0000-0002-8232-8020)
- Philippe Corcia (ORCID: https://orcid.org/0000-0002-1625-8845)
- Orla M. Hardiman (ORCID: https://orcid.org/0000-0003-2610-1291)
- Fouke Ombelet (ORCID: https://orcid.org/0000-0003-1530-0869)
- Ammar Al‐Chalabi (ORCID: https://orcid.org/0000-0002-4924-7712)
- Nikita Lamaire
- Christopher J. McDermott (ORCID: https://orcid.org/0000-0002-1269-9053)
- Sarah Opie-Martin (ORCID: https://orcid.org/0000-0003-0951-8589)
- Ruben P. A. van Eijk (ORCID: https://orcid.org/0000-0002-7132-5967)
- Umberto Manera (ORCID: https://orcid.org/0000-0002-9995-8133)
- Caroline Ingre (ORCID: https://orcid.org/0000-0001-5327-7204)
- Harry McDonough
- Rosario Vasta (ORCID: https://orcid.org/0000-0002-0393-4736)
- Jan H. Veldink (ORCID: https://orcid.org/0000-0001-5572-9657)
- Michael A. van Es (ORCID: https://orcid.org/0000-0002-7709-5883)
- Stefan Sennfält (ORCID: https://orcid.org/0000-0002-7114-2757)
- Robert McFarlane (ORCID: https://orcid.org/0000-0001-7380-4219)
- Éanna Mac Domhnaill (ORCID: https://orcid.org/0009-0001-1197-9950)
- Daphne N. Weemering (ORCID: https://orcid.org/0009-0005-4182-3294)
- Frederik Hobin (ORCID: https://orcid.org/0009-0005-2167-5896)
- Mark Heverin
- Leonard van den Berg
- Adriano Chiò
- Mónica Povedano Panadés
- Pamela Shaw
- Alejandro Caravaca Puchades
- Mohammed Mouzouri
- Oskar Holmdahl
Institutions
- Allen Institute for Brain Science (US)
- King's College London (GB)
- Trinity College Dublin (IE)
- Bellvitge University Hospital (ES)
- Karolinska Institutet (SE)
- University Medical Center Utrecht (NL)
- Institut d'Investigació Biomédica de Bellvitge (ES)
- Centre Hospitalier Universitaire de Tours (FR)
- Laboratoire National de Référence (MA)
- Neuroscience Institute (IT)
- University of Turin (IT)
- University of Sheffield (GB)
- KU Leuven (BE)
Publication Details
- Journal
- Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
- Published
- 2025-05-06
- DOI
- https://doi.org/10.1080/21678421.2024.2448536
- Primary Topic
- Amyotrophic Lateral Sclerosis Research
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Biogen
- Ulla-Carin Lindquists stiftelse för ALS-forskning
- Sophia University
- National Institute for Health and Care Research
- Motor Neurone Disease Association
- European Commission
- Science Foundation Ireland
- Ministero della Salute
- KU Leuven
- Università degli Studi di Torino
- Regione Piemonte
- Medical Research Council
- Economic and Social Research Council
- NIHR Sheffield Biomedical Research Centre