11 June 2025
Press
- SLA
A vast Franco-German study conducted by the F-CRIN-accredited ACT4ALS-MND national network, and coordinated by Limoges University Hospital, is exploring the causes of weight loss in amyotrophic lateral sclerosis (ALS). The aim is to gain a better understanding of the determinants of weight loss, in order to improve patients' quality of life and survival by proposing personalized nutritional strategies.
A European collaboration for a major scientific challenge
Why do people with ALS lose weight so early and unevenly? This crucial question is at the heart of the FG-CoALS project, a large-scale French-German study coordinated by Pr Philippe Couratier, co-coordinator of the ACT4ALS-MND network, Head of the Limoges ALS Center and leader of the Filslan rare disease network, a recognized specialist in motor neuron diseases.
Funded by the French National Research Agency (ANR), this multicenter study, which began in October 2024, will follow over 1,000 patients in 9 ALS reference centers in France and Germany. It aims to identify the biological, genetic, metabolic and cognitive factors associated with weight loss in ALS, a still incurable neurodegenerative disease that affects more than 6,000 people in France.
Beyond standard consultations, patients will benefit from a battery of highly advanced analyses: nutritional questionnaires, neurological and respiratory check-ups, biological samples, brain and spinal cord MRIs. All data, pseudonymized, will be integrated into France Cohortes, a secure database promoting scientific sharing.
"Weight loss is an underestimated warning signal of ALS. Understanding it better means we can act earlier and more effectively", emphasizes Prof. Couratier.
To better understand the disease and personalize its management
The ambition of FG-CoALS is twofold: to better understand the mechanisms of weight loss in ALS and to propose personalized nutritional strategies likely to slow its progression. This approach could help prolong survival, maintain patients' independence for longer, and improve their daily quality of life.
This study opens up new concrete perspectives for improving the quality of life of ALS patients, made possible by the collaboration of French and German reference centers, and the ACT4ALS-MND network's commitment to advancing clinical research into this still incurable disease.
Patients interested in finding out more or taking part in the study can contact their ALS reference center or visit the ACT4ALS-MND network website: www.act4als-mnd.fr
