Greek Registry for Amyotrophic Lateral Sclerosis (ALS‐GR): An Observational Cohort of Individuals With ALS Across 11 Specialized Centers in Greece
Year: 2025
Type: article
Study design: Observational Study
Abstract: BACKGROUND: Epidemiological studies on amyotrophic lateral sclerosis (ALS) in Greece are scarce and outdated. METHODS: We performed an observational cohort study in 11 specialized centres across Greece. Adult individuals with ALS diagnosed based on the Gold Coast criteria were recruited. Data were collected on socio-demographics, somatometrics, comorbidities, early life exposures, disease-related parameters, riluzole intake, motor and non-motor symptoms, as well as functional progression. Follow-up evaluations were scheduled on approximately 6-9-12-18-24 months. Our aim was to identify shortcomings in the monitoring of patients with ALS in specialized centers, delineate the course of the disease, and capture factors related to the earlier occurrence of ALS and potential diagnostic delays. RESULTS: A total of 229 ALS patients were included in the present registry. The average age of diagnosis was 63.7 years, with an average 12.8-month interval between symptom onset and diagnosis. The presence of bulbar symptoms at onset was associated with shorter diagnostic delays. Systematic physical exercise was strongly linked to the earlier onset of symptoms. Disease progression was slower during the prediagnostic stage, more precipitous over the first year following diagnosis, and milder thereafter (~1-point monthly decline in ALSFRS-R on average, post-diagnosis). The majority of associated motor and non-motor symptoms accumulated over time. The overwhelming majority of patients were prescribed the liquid form of riluzole, which exhibited an excellent tolerability profile. Greek islands are probably the most underprivileged in terms of specialized monitoring of ALS cases. CONCLUSIONS: The present observational cohort study mapped key aspects and shortcomings of ALS management in Greece.
Source: European Journal of Neurology
DOI: 10.1111/ene.70403
Authors: Ioannis Liampas, Vasilios K. Kimiskidis, Vasiliki Zouvelou, Dimitra Veltsista, Afroditi Moscholouri, Eleftherios Triantafyllou, Ariadni Daponte, Sofia Xirou, Angeliki‐Erato Sterpi, Stavroula Salakou, Vasiliki Poulidou, Marianthi Arnaoutoglou, Zisis Tsouris, Styliani Ralli, Efthimios Dardiotis, Sotirios Papagiannopoulos, Alexandros Zampetakis, Ιoannis Zaganas, Panayiotis Mitsias, Alexandros Giannakis, Spyridon Konitsiotis, Fotios Kefalas, Eleni Alexiou, Panagiotis Stoiloudis, Dimitrios Parissis, Stratis Kiamelidis, Aikaterini Terzoudi, Georgios Tsivgoulis, Michail Rentzos, Elisabeth Chroni
Institutions: University of Thessaly, University of Patras, University Hospital of Larissa, Aristotle University of Thessaloniki, AHEPA University Hospital, National and Kapodistrian University of Athens, University General Hospital Attikon, G. Papanikolaou General Hospital, University of Crete, University Hospital of Heraklion, University of Ioannina, University Hospital of Ioannina, Evangelismos Hospital, Democritus University of Thrace, University Hospital of Alexandroupolis
Language: English
Subfield: Neurology
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,600
OpenAlex ID: W4417458051