CClinicalTrials.gg
RecruitingNCT06147843FG-CoALSUpdated Aug 6, 2026

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

An interventional study of Blood sample in Amyotrophic Lateral Sclerosis, sponsored by University Hospital, Limoges. Recruiting at 9 sites in 2 countries. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-08-06.

Sponsored by University Hospital, Limoges · Not applicable, Interventional, and Other

Phase
Not applicable
Study type
Interventional
Enrollment
1,000
Allocation
Not applicable
Ages
18 Years and older
Sex
All
01

Study summary

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.

Read the detailed description

ALS is the most frequent adult onset motor neuron disease and is highly variable in terms of clinical features, genetics, and neuropathology. A large body of evidence has demonstrated the importance of weight loss at the time of diagnosis and during disease progression. Weight loss affects between one and two-thirds of patients and is adversely associated with survival. High caloric nutrition was able to slow weight loss and prolong survival in fast progressing ALS patients. Pathophysiological mechanisms underlying weight loss remain unknown because high-quality cohort data collecting clinical features, genetics, omics, and imaging related to the metabolic and disease status of patients are lacking. The investigators hypothesize that weight loss in ALS patients is biologically driven through specific pathways. The investigators propose an innovative and ambitious multidisciplinary project to structure a large French-German cohort to identify markers associated with weight loss. The investigators aim at identifying the biological correlates of weight loss to disentangle the mechanistic basis of this critical symptom and to determine clinical and biological profiles along with their impact on disease progression and survival.

02

Conditions studied

  • Amyotrophic Lateral Sclerosis

Keywords

  • Amyotrophic lateral sclerosis
  • Weight Loss
  • Genetics
  • Nutrition
  • Prognosis
  • Metabolomics
  • Inflammation
03

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
No

Inclusion criteria

  • 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 criteria

Exclusion Criteria:

  • 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.
04

Study design

Phase
Not applicable
Primary purpose
Other
Allocation
Not applicable
Intervention model
Single group
Masking
None (open label)
Enrollment
1,000 participants (estimated)

Study arms

  • Other
    ALL participants

    ALS patients will be stratified in 4 groups according to the weight loss percentage: a) no weight loss; b) \<5% of weight loss; c) 5-10% of weight loss; d) \>10% of weight loss. In order to identify the genomic, metabolomic, metabolic, neurofilaments, and inflammation markers associated to weight loss.

    Other: Blood sample

Interventions

  • OtherBlood sample

    Blood sample will be taken to identify Genomic, metabolomic, metabolic, neurofilaments, and inflammation markers associated to weight loss

05

What researchers measure

Primary outcomes

  1. Survival

    Survival evaluated in month since diagnosis

    Time frame: every 6 month until 18 months of follow up

Secondary outcomes

  1. 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)

    Time frame: every 6 month until 18 months of follow up

06

Study locations

7 of 9 sites recruiting
  • CHU de Lille
    Lille, 59037, France
    Recruiting
  • Limoges University Hospital
    Limoges, 87042, France
    Recruiting
  • Hôpital de la Timone
    Marseille, 13005, France
    Recruiting
  • Hôpital Gui Chauliac
    Montpellier, 34295, France
    Recruiting
  • CHU de Nice
    Nice, 06001, France
    Recruiting
  • Hôpital de la Pitié Salpêtrière
    Paris, 75013, France
    Recruiting
  • CHU de Tours
    Tours, 37044, France
    Recruiting
  • Klinik für Medizinische Hochschule Hannover Carl-Neuberg-Str. 1
    Hanover, Allemagne 30625, Germany
    Not yet recruiting
  • Klinik für Neurologie, Universitäts- und Rehabilitationskliniken Ulm (RKU
    Ulm, Allemagne 89081, Germany
    Not yet recruiting
07

References and documents

Individual participant data

Plan to share: Yes — The FG-CoALS project is part of the 11 cohorts of rare diseases of the National Research Agency (ANR) in France. The ANR has entrusted "France Cohortes" with the task of supporting 11 projects on rare diseases. With the implementation of a FAIR approach right from the data collection phase, the national research infrastructure dedicated to "France cohortes" will contribute to the management, dissemination and re-use of data, while guaranteeing the strict protection of the data.

No publications or documents are linked to this record.

08

Registry details

Key details

Study ID
NCT06147843
Lead sponsor
University Hospital, Limoges
Collaborators
National Research Agency, France, Centre de Recherche en biomédecine de Strasbourg INSERM UMR-S1118, Paris Brain Institute (ICM), Institut National de la Santé et de la Recherche Médical - délégation Grand Ouest INSERM U1253, Klinik für Neurologie, Universitäts- und Rehabilitationskliniken Ulm (RKU), Centre de Données Cliniques et de Recherche CDCR, UMR Inserm U1253-IBRain-Neurogénétique et Physiopathologie Neuronale, France Cohorte
Responsible party
Sponsor
First posted
Nov 28, 2023
Start date
Sep 17, 2024
Primary completion
Sep 30, 2027 (estimated)
Completion
Sep 30, 2029 (estimated)
Last update
Aug 6, 2026

Study contacts

Philippe COURATIER, Pr
Contact
philippe.couratier@chu-limoges.fr
05 55 05 15 69
Andrea ERAZO ALEMAN, Dr
Contact
DaniellsAndrea.ERAZOALEMAN@chu-limoges.fr
Philippe COURATIER, Professor
principal investigator · University Hospital, Limoges

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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