Physical Activity Level at Home in CMT1A Patients: Wearable Sensor Assessment
This research is investigating Charcot-Marie-Tooth disease type 1A (CMT1A), a genetic condition that affects the nerves and can make walking and movement difficult, usually starting in childhood. There isn't a specific cure for CMT1A yet, so current treatments focus on managing symptoms. This study wants to see if small, easy-to-wear sensors can accurately measure how much people with CMT1A move around and go about their daily lives at home. Currently, assessing the condition involves long visits to a specialist clinic. The hope is that these everyday sensors could offer a simpler way to keep track of the condition over time. This could help doctors understand how CMT1A affects people in their regular environment, personalise rehabilitation, and even help test new treatments like "Nano-Cur" in the future.
At a glance
What is this study about?
Charcot-Marie-Tooth disease, specifically type 1A (CMT1A), is a common inherited condition that affects the nerves in your body. It usually starts during childhood and gradually makes muscles weaker, especially in the lower legs and feet. This can lead to difficulties with walking and everyday activities. While there isn't a specific medicine to cure CMT1A right now, treatments mainly focus on managing the symptoms and helping people live as well as possible. This study is about finding better ways to understand and monitor the condition.
Currently, to properly check how CMT1A is affecting someone, they need to visit a special clinic for detailed tests. These tests can take a long time and might not fully show what a person's life is like every day. Things like feeling tired or being in a different mood could affect the results on a specific day. This study proposes using small, wearable sensors – like a smartwatch – to measure how active people with CMT1A are at home, over longer periods.
The main goal of this research is to see if these wearable sensors can provide a good, accurate picture of how CMT1A affects daily movement, similar to what the more detailed clinic tests show. If these sensors prove to be useful, they could make it much easier for doctors to keep an eye on the condition, tailor treatments like physiotherapy more personally, and help in testing new medicines for CMT1A – including a potential new treatment called "Nano-Cur" that is currently being developed.
Key takeaways
- The study aims to understand daily movement in CMT1A using wearable sensors.
- It hopes to find a simpler way to track the condition than lengthy clinic visits.
- The research could help personalise care and test new treatments for CMT1A.
- This is a research study and not a direct treatment for CMT1A.
- Participants need to be diagnosed with CMT1A and be treated at specific centres in France.
Who may be eligible?
To be able to take part in this study, you need to be at least 18 years old and have a confirmed diagnosis of Charcot-Marie-Tooth disease type 1A (CMT1A) through genetic testing. You should also be a patient at the National Reference Centre for Rare Peripheral Neuropathies in Limoges, France, or have had walking tests done at their Quantified Movement Analysis Laboratory.
It's important that you can walk on your own, even if you sometimes use a walking stick or frame. You also need to be a part of the French social security system and be able to understand and agree to take part in the study by signing a consent form.
There are some reasons why you might not be able to join. For example, if you have another nerve condition that also affects your walking, or if you can't wear the sensor device due to a skin allergy or discomfort. You also can't take part if you're pregnant or breastfeeding, if you're already in another research study, or if you wouldn't be able to follow the study instructions.
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 a genetically confirmed diagnosis of CMT1A?
- Are you a patient at the specified centre in Limoges, France?
- Can you walk independently, with or without a walking aid?
- Are you not currently pregnant or breastfeeding?
- Are you able to follow study instructions?
What does participation involve?
The study involves wearing a small sensor device, likely on your body, that will track your physical activity at home for a certain period. The researchers will compare the information from this sensor with the results from the more detailed clinic tests you would normally have. You will need to attend appointments at the National Reference Centre for Rare Peripheral Neuropathies in Limoges, France, or their Quantified Movement Analysis Laboratory. The study aims to understand your daily activity over time, rather than just on single clinic visits. Specific details about the number of visits, duration, and what exactly happens at each appointment would be explained by the study team.
Potential risks and benefits
Locations (1)
- Chu de LimogesVerified postcodeLimoges, France
Common questions
What is Charcot-Marie-Tooth disease type 1A (CMT1A)?
It's an inherited condition that causes nerve damage, mainly in the legs and arms, leading to muscle weakness and difficulties with movement.
What is the main goal of this study?
To see if small wearable sensors can accurately measure daily activity in people with CMT1A, similar to specialist clinic tests.
What are 'wearable sensors'?
These are small devices, like fitness trackers, that you wear on your body to monitor movement and activity levels.
Where is this study taking place?
It's being conducted in Limoges, France, at the National Reference Centre for Rare Peripheral Neuropathies.
Will taking part in this study cure my CMT1A?
No, this study is about research methods for monitoring CMT1A, not a treatment. But it could help future treatment development.
How to find out more
Maxence COMPAGNAT, Pr
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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