A Remote Physical Activity Program in the Population Suffering from Type 1 Myotonic Dystrophy
This research is exploring a new online exercise programme called 'PACE' for people living with Myotonic Dystrophy Type 1 (DM1). Many people with DM1 found it harder to access important exercise programmes during the COVID-19 pandemic, which can make their health problems worse. The PACE tool offers various exercise plans that can be done at home. The study wants to find out if this online tool is easy and helpful to use for people with DM1. They also want to see if it improves their physical and thinking skills, and if it's a good value way to provide support. Sixty people will take part, with some using the PACE tool for 12 weeks and others continuing as normal. Assessments will be done online before and after the programme.
At a glance
What is this study about?
The COVID-19 pandemic created many challenges, especially for people who need regular help with exercise and rehabilitation. This was particularly true for individuals with a condition called Myotonic Dystrophy Type 1 (DM1). DM1 can affect strength and cause other health issues, and during the pandemic, it was harder for many to get the specialised support they needed, which sometimes made their existing health problems more noticeable.
This study introduces an exciting new idea: a web-based tool called 'PACE'. PACE offers many different exercise programmes that can be done from home. The main goal of this research is to see if using the PACE tool is practical, easy for people with DM1 to use, and if they find it helpful. Researchers also want to measure if the programme improves participants' physical abilities and their thinking skills.
Finally, the study will also look at whether this type of online programme is a cost-effective way to provide support and exercise for people with DM1. By making exercise more accessible, especially from home, the PACE tool could help people stay active and manage their condition better, without the extra worry of catching illnesses like COVID-19.
Key takeaways
- Tests a new online exercise programme (PACE) for Myotonic Dystrophy Type 1 (DM1).
- Aims to improve physical activity and thinking skills from home.
- Participation involves 12 weeks of online exercises for some, and online assessments for all.
- Seeks to make rehabilitation more accessible and safer.
- Benefits could include better health; risks are minimal, similar to starting a new exercise.
- Genetic confirmation of DM1 and ability to exercise are key for joining.
Who may be eligible?
To be considered for this study, you must have a confirmed diagnosis of Myotonic Dystrophy Type 1 (DM1) through a genetic test. You should be aged between 18 and 60 years old and be able to do some form of exercise, even if it's while sitting down.
There are also some reasons why you might not be able to join. For example, if you already exercise regularly (more than three times a week or for more than 150 minutes a week), as the study wants to see how the programme helps people who aren't currently very active. Also, if you don't speak French or English, or if your health condition means you absolutely cannot do any physical activity, you wouldn't be able to take part.
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.
- Do you have a genetically confirmed diagnosis of Myotonic Dystrophy Type 1 (DM1)?
- Are you between 18 and 60 years old?
- Can you do some form of exercise, even if it's sitting down?
- Do you currently exercise less than three times a week or for less than 150 minutes per week?
- Do you speak either English or French?
- Can you provide your consent to take part in the study freely?
What does participation involve?
If you join this study, you'll be randomly put into one of two groups. Two out of three people will be in the 'experimental group', meaning they will use the PACE online exercise tool. The remaining one third will be in the 'control group', meaning they will continue with their usual activities without using PACE.
If you're in the experimental group, you'll be given access to the PACE tool, which has 35 different exercise programmes. You'll choose one that suits you and be asked to do these exercises daily for 12 weeks. Everyone in the study, whether in the experimental or control group, will have their physical and thinking skills assessed online via Zoom both at the beginning of the study and again after 12 weeks. There are no direct face-to-face visits required.
Potential risks and benefits
Locations (2)
- Groupe de recherche interdisciplinaire Groupe de recherche interdisciplinaire sur les maladies neuromusculairesVerified postcodeJonquière, Canada
- Université du Québec à ChicoutimiVerified postcodeSaguenay, Canada
Common questions
What is Myotonic Dystrophy Type 1 (DM1)?
DM1 is a genetic condition that causes muscles to weaken over time and can affect other parts of the body.
What is the 'PACE' tool?
PACE is an online programme that offers various exercise routines tailored for people with DM1.
Do I need to be good at using computers?
The study aims to check if the tool is easy to use, so basic computer or internet skills might be helpful for accessing it via a web browser.
Will I have to pay for anything?
The study does not mention any costs for participants; the PACE tool and assessments are part of the research.
How long will the study last for me?
If you participate, the main exercise programme and assessments will take place over a 12-week period.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
Community discussion
Powered by our forum at community.patient.info. Please be respectful — this is not medical advice.