French-German Cohort Study to Determine Factors Associated With Weight Loss in Amyotrophic Lateral Sclerosis
This study is investigating why people with Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neuron Disease, often lose weight. Weight loss can be a significant challenge for people with ALS, and understanding its causes could lead to better ways to manage the condition. Researchers will gather information from ALS patients in France and Germany. They will collect blood samples to look for biological clues and ask participants to complete questionnaires about their health. By identifying what causes weight loss, the study aims to improve the care and quality of life for people living with ALS. This research does not involve new medicines, but rather helps us understand the disease better.
Em resumo
Sobre o que é este estudo?
This study is focused on Amyotrophic Lateral Sclerosis (ALS), which is also known as Motor Neuron Disease. It's a condition that affects the nerves in the brain and spinal cord, leading to muscle weakness. A common problem for people with ALS is losing weight, and this can happen both when first diagnosed and as the disease progresses.
While we know weight loss is common, doctors don't fully understand why it happens in ALS. This study aims to find those answers. By understanding the underlying reasons for weight loss, researchers hope to develop better strategies to help people with ALS maintain their weight. This could potentially improve their overall health, how they feel day-to-day, and even how long they live.
To do this, a team of doctors and researchers from France and Germany are working together. They are creating a large group of people with ALS (a cohort) who will take part. They will carefully study these individuals to find specific signals or 'markers' in their bodies that are linked to weight loss. This will involve collecting blood samples for detailed analysis and asking participants to fill out questionnaires about their health and lifestyle.
Pontos principais
- This study explores why people with ALS lose weight.
- It aims to find biological reasons for weight loss to improve patient care.
- Participation involves questionnaires and blood samples, no new drugs.
- The study includes patients from France and Germany.
- Findings could help develop better ways to manage ALS and improve quality of life.
Quem pode ser elegível?
To join this study, you need to be an adult over 18 years old and have been recently diagnosed with ALS, according to specific medical guidelines. You must also be receiving your care at one of the specialist ALS centres taking part in France or Germany.
It's important that you are able to understand what the study involves and confirm you're happy to take part by signing a consent form. You should also be willing to take standard ALS medication, such as Riluzole, if prescribed by your doctor.
If you find it difficult to understand the study information, or if a medical condition prevents you from giving consent, you wouldn't be able to participate. This also applies if you are unwilling to take Riluzole therapy.
Este estudo pode ser adequado para você?
Responda a estas perguntas rápidas para ver se você pode ser elegível. Este é apenas um guia — a decisão final é da equipe de pesquisa.
- Você tem 18 anos ou mais?
- Have you been recently diagnosed with ALS?
- Are you receiving your ALS care at a specialist centre in France or Germany that is part of the study?
- Are you able to understand the study information and willing to sign a consent form?
- Are you willing to take standard ALS medication like Riluzole if prescribed?
O que envolve a participação?
If you decide to take part in this study, you will receive the usual high-quality care for ALS patients from your specialist centre. In addition, for this study, you will be asked to complete several questionnaires. These questionnaires will help the researchers understand more about your health and experiences. You will also have blood samples taken. These blood samples will be analysed to look for specific 'biological markers' that might be linked to weight loss. The study does not involve taking any new medications, only standard care, questionnaires, and blood tests. The total duration of participation will depend on the study's follow-up schedule, but researchers will explain this fully during the consent process.
Riscos e benefícios potenciais
Locais (7)
- CHU de LilleCódigo postal verificadoLille, France· Ainda não recrutando
- Limoges University HospitalCódigo postal verificadoLimoges, França· Recrutamento
- Hôpital de la TimoneCódigo postal verificadoMarselha, França· Ainda não recrutando
- Hôpital Gui ChauliacCódigo postal verificadoMontpellier, France· Ainda não recrutando
- CHU de NiceCódigo postal verificadoNice, France· Ainda não recrutando
- Hôpital de la Pitié SalpêtrièreCódigo postal verificadoParis, França· Ainda não recrutando
- CHU de ToursCódigo postal verificadoTours, France· Ainda não recrutando
Perguntas frequentes
What is ALS?
ALS, or Amyotrophic Lateral Sclerosis, is a condition that affects nerve cells in the brain and spinal cord, leading to muscle weakness over time.
Why is weight loss important in ALS?
Weight loss is common in ALS and can affect how people feel and their overall health. Understanding it better could lead to improved treatments.
Receberei novos medicamentos neste estudo?
No, this study does not involve new medicines. You will continue to receive your usual, standard medical care for ALS.
How much blood will be taken?
Blood samples will be taken for analysis, similar to a routine blood test you might have at your doctor's surgery.
O que acontece com minhas informações?
All information collected, including blood samples and questionnaire responses, will be handled with strict confidentiality and used only for research purposes.
Como saber mais
Philippe COURATIER, Pr
Sempre consulte seu médico ou especialista antes de decidir participar de um estudo.
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Desenvolvido pelo nosso fórum em community.patient.info. Por favor, seja respeitoso — isto não é um conselho médico.