Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease. Studies have shown the importance of weight loss at the time of diagnosis and during the progression of the disease. However, the pathophysiological mechanisms behind weight loss remain unknown. Identifying these mechanisms could make it possible to propose an effective therapeutic strategy against weight loss for ALS patients, which could improve their survival and quality of life. In this context, the investigators are proposing an innovative multidisciplinary project aimed at structuring a large Franco-German cohort to identify the markers associated with weight loss in ALS.
Participants will undergo high quality standard care for ALS patients. In addition, participants will be asked to respond different questionnaires and blood samples will be taken for analysis to identify biological markers.
Incident cases included at the time of diagnosis with a definite, probable, probable laboratory-supported, or possible ALS according to El Escorial revised criteria and Gold Coast criteria for early diagnosis.
Incident ALS cases identified and followed-up in the participant ALS & Other Motor Neuron Diseases Referral Centres: seven in France and two in Germany.
Patients who signed the informed consent form.
Adults aged >18 years old
Inability to understand the requirements of the protocol.
Cognitive inability to sign and comprehend the informed consent form.
Patients who will not accept Riluzole therapy during their follow-up.
Single group
Blood sample
Other interventionBlood sample will be taken to identify Genomic, metabolomic, metabolic, neurofilaments, and inflammation markers associated to weight loss
Survival
Survival evaluated in month since diagnosis
Disease progression (ALSFRS-R slope)
The ALSFRS-R is a validated rating instrument for monitoring the progression of disability in patients with amyotrophic lateral sclerosis (ALS)
Click on the lead sponsor to view all of their trials.
University Hospital, Limoges
Lead sponsor
National Research Agency, France
Collaborator
Centre de Recherche en biomédecine de Strasbourg INSERM UMR-S1118
Collaborator
Paris Brain Institute (ICM)
Collaborator
Institut National de la Santé et de la Recherche Médical - délégation Grand Ouest INSERM U1253
Collaborator
Klinik für Neurologie, Universitäts- und Rehabilitationskliniken Ulm (RKU)
Collaborator
Centre de Données Cliniques et de Recherche CDCR
Collaborator
UMR Inserm U1253-IBRain-Neurogénétique et Physiopathologie Neuronale
Collaborator
France Cohorte
Collaborator
