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Study of factors linked to weight loss in amyotrophic lateral sclerosis

Collects blood samples and questionnaires from adults with amyotrophic lateral sclerosis to study weight loss.

Plain-language title generated from the registry record
Registry title: French-German Cohort Study to Determine Factors Associated With Weight Loss in Amyotrophic Lateral Sclerosis

Key facts

Where
Hanover and Ulm, GermanySee the 2 sites

Where in Germany

  • Klinik für Medizinische Hochschule Hannover Carl-Neuberg-Str. 1Hanover, GermanyNot yet recruiting
  • Klinik für Neurologie, Universitäts- und Rehabilitationskliniken Ulm (RKUUlm, GermanyNot yet recruiting

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?
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Trial details

Who runs it
University Hospital, Limoges
Trial code
NCT06147843
Record updated
6 August 2026
Original description
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.Read full original descriptionShow less

French-German Cohort Study to Determine Factors Associated With Weight Loss in Amyotrophic Lateral Sclerosis

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.

Inclusion: 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.

Exclusion: Patients who will not accept Riluzole therapy during their follow-up; Inability to understand the requirements of the protocol; Cognitive inability to sign and comprehend the informed consent form.

ClinicalTrials.gov NCT06147843