Home Based Personalized Training and Video Consultation in Mitochondrial Myopathies: Study of Efficacy and Tolerance.
This study is investigating if a specially designed, home-based exercise plan, supported by online video calls with a healthcare professional, can benefit people with mitochondrial myopathies. These conditions often cause muscle weakness and fatigue, making exercise challenging. Researchers want to see if this personalized training can improve physical abilities like muscle strength and how well patients can tolerate effort, without causing side effects such as increased muscle damage or changes in their condition at a cellular level. The current advice for exercise in these patients doesn't always provide clear guidance, so this study hopes to find practical, easy-to-follow exercise recommendations that can be done at home using simple equipment.
At a glance
What is this study about?
Mitochondrial myopathies are conditions that affect how your body's cells produce energy, often leading to muscle weakness and tiredness, even after light exercise. While we know that physical activity can be good for health, it's particularly tricky to get the right exercise advice for people with these conditions, as they need very specific guidance due to their symptoms.
Currently, there isn't enough clear information or detailed plans for how people with mitochondrial myopathies can exercise safely and effectively at home. Existing recommendations don't always provide practical, day-to-day guidance, leaving healthcare professionals without clear instructions on how to set up appropriate exercise programs. This means many patients might miss out on the benefits of exercise because it's hard to know what to do.
This study aims to solve this problem by testing a personalised exercise program that people can do at home. The program will be a mix of exercises to improve endurance and strengthen muscles. The exciting part is that participants will get support and guidance through online video calls with healthcare professionals. Researchers want to see if this approach can improve muscle strength, how well people can tolerate exercise, and their overall ability to do daily activities, all without making their condition worse or causing any harm.
Key takeaways
- A study for people with genetically-confirmed mitochondrial myopathy.
- Investigates a personalised, home-based exercise program.
- Uses online video calls for support and monitoring.
- Aims to improve muscle strength and physical abilities.
- Seeks to find safe and practical exercise recommendations.
- Participation lasts for at least one year.
Who may be eligible?
To join this study, you need to be at least 18 years old and have a mitochondrial myopathy that has been confirmed by genetic tests. Your condition should mainly affect your muscles, and you should be able to walk, either on your own or with some help. You also need to have internet access, a computer with a camera or a smartphone, so you can have regular video calls for at least a year. You'll need to give your written permission to take part, and if you're a woman who could become pregnant, you must be using reliable contraception.
There are also some reasons why you might not be able to join. For example, if you have other health conditions that would make taking part unsafe, or if your current physical health makes the exercise program unsuitable. You also can't join if you've had severe tiredness or muscle pain in the last week, or if you are pregnant, breastfeeding, or planning to become pregnant during the study. If you fall into certain legal categories, such as being under guardianship, you might also not be able to participate.
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?
- Has a doctor confirmed you have mitochondrial myopathy, and was it confirmed by a genetic test?
- Do you mainly experience muscle problems due to your condition?
- Can you walk, even if you need some help?
- Do you have internet access and a device for video calls (like a smartphone or computer with a camera)?
- Are you able to use reliable contraception if you're a woman who could become pregnant?
What does participation involve?
If you join this study, you will take part in a personalised exercise program that combines endurance and muscle-strengthening exercises. All exercises will be performed at home using simple, inexpensive equipment. You will have regular support and monitoring through online video calls with a healthcare professional. The study aims to follow participants for at least one year. During this time, there will be assessments to check your muscle strength, how well you can tolerate effort, and your functional abilities to see how the training is affecting you. The exact number of video consultations and assessments will be explained to you.
Potential risks and benefits
Locations (1)
- CHU de NiceVerified postcodeNice, France· Recruiting
Common questions
What is a mitochondrial myopathy?
It's a condition where your body's cells struggle to produce energy, often leading to muscle weakness and tiredness.
Will I have to go to a clinic for exercise?
No, the exercise program is designed to be done at home using simple equipment.
How will I get support during the study?
You'll have regular check-ins and guidance through online video calls with a healthcare professional.
How long will the study last if I join?
The study aims to follow participants for at least one year.
What kind of exercises will I do?
The program will include a mix of exercises to improve your endurance and strengthen your muscles.
How to find out more
Sabrina SACCONI
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
Community discussion
Powered by our forum at community.patient.info. Please be respectful — this is not medical advice.