Metabolism and Nutrition in MND
This study, called MET-MND, is for people with Motor Neurone Disease (MND). It aims to understand how MND affects your body's energy use, nutrition, and weight. Many people with MND experience weight loss and eating difficulties, which can be due to swallowing problems, tiredness, or changes in how their body uses energy. The researchers want to find out the best ways to measure these things accurately and comfortably during a regular clinic visit. They will ask a small group of people to have their body measured and to keep a food diary. This information will help design bigger studies in the future to improve care for people with MND.
At a glance
What is this study about?
Motor Neurone Disease (MND) is a condition that affects the nerves in your brain and spinal cord, which can make it harder to move, speak, swallow, and breathe over time. We know that many people living with MND can experience weight loss and may not get all the nutrients they need. This can happen for several reasons, such as finding it hard to swallow, feeling very tired, or because the disease changes how your body uses up its energy.
This study, called MET-MND, wants to look closely at these issues. The main goal is to find out the best and most comfortable ways to measure things like your body's energy use, your nutrition, and your body make-up (like muscle and fat). These measurements would be taken during your regular hospital appointments, so it wouldn't involve too many extra visits.
By understanding what works well and what doesn't, the researchers can improve how they gather this information. This is really important because it will help them plan bigger, more comprehensive studies in the future. The ultimate aim is to better understand how nutrition and metabolism are affected by MND, which could eventually lead to better ways to support people living with the condition.
Key takeaways
- This study aims to improve understanding of MND's impact on body energy and nutrition.
- It's a small study to check if certain measurements are practical and comfortable for people with MND.
- Participation involves one clinic visit and a 7-day food diary at home.
- No new medicines or treatments are part of this study.
- Your involvement helps researchers design better future studies to aid MND patients.
- You can stop taking part at any time without affecting your medical care.
Who may be eligible?
To be able to take part in this study, you need to be an adult aged 18 or older.
You must have Motor Neurone Disease (MND) and have recently been referred to the specialist breathing service at Guy's and St Thomas' NHS Foundation Trust in London.
You would not be able to join if you are unable to understand the study information and give your full permission, or if you have a memory or thinking problem that makes it hard to understand what's involved.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you 18 years old or older?
- Do you have Motor Neurone Disease (MND)?
- Have you recently been referred to the specialist breathing service at Guy's and St Thomas' NHS Foundation Trust?
- Can you understand the study information and give your full permission to take part?
What does participation involve?
If you decide to take part, you will have one study visit that will happen at the same time as one of your regular clinic appointments. This visit is expected to last about 1 to 1.5 hours.
During this visit, different measurements will be taken. These include weighing you, measuring your height, and checking your body make-up using small electrical currents (which you won't feel) and skinfold measurements. Your body's energy use will be measured while you rest, using either a special hood or a mask over your nose and mouth to collect your breath. You'll also complete a questionnaire about how MND affects your daily life.
After your clinic visit, you will be asked to keep a food diary for seven days at home, recording everything you eat and drink. You can do this using a special app on your phone or a paper diary. Help will be available if you need it to fill in the diary. There are no new medications involved in this study, and the total time you're involved will be for this one visit and the week of food journaling.
Potential risks and benefits
Locations (1)
- Guy's & St Thomas' NHS Foundation TrustVerified postcodeLondon, United Kingdom
Common questions
What is the main goal of this study?
The main goal is to find the best and most comfortable ways to measure how MND affects your body's energy use and nutrition during a routine clinic visit.
How long will I be involved in the study?
You'll have one study visit that lasts about 1 to 1.5 hours, followed by keeping a food diary at home for seven days.
Do I have to take any new medicines?
No, this study does not involve taking any new medications.
Will I get any special treatment if I join?
You won't receive special treatment or direct medical benefit from this study, but your contribution will help future research into MND care.
What if I change my mind about taking part?
You are free to withdraw from the study at any time, without giving a reason, and it will not affect your medical care.
How to find out more
Angela Reddy
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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