Active not recruitingOBSERVATIONAL

Myotonic Dystrophy - Vascular and Cognition

This study is investigating people with Myotonic Dystrophy Type 1 to understand how their thinking and memory skills are affected. Doctors have noticed that some people with this condition have difficulties with things like planning and problem-solving, which can sometimes be severe. We also know that many people with Myotonic Dystrophy Type 1 often develop type 2 diabetes or have trouble processing sugar. Researchers believe there might be a link between these sugar-processing problems and changes seen in the brain, which could affect thinking abilities. They want to see if diabetes could be contributing to these brain changes and cognitive difficulties. The study will involve brain scans (MRIs) and special tests to assess memory and thinking skills.

At a glance

Status

Active not recruiting

Sponsor

University Hospital, Lille

Enrolment target

Start

14 Oct 2021

Estimated completion

01 Jan 2029

Myotonic Dystrophy 1 Diabetes Carbohydrate Intolerance

What is this study about?

Imagine your brain is like a very complex computer. For people with Myotonic Dystrophy Type 1, sometimes this computer doesn't quite work as smoothly as it should, leading to difficulties with things like remembering, planning, or understanding. These problems can be different for everyone, from mild to more noticeable.

We know that Myotonic Dystrophy Type 1 is caused by a genetic glitch that can affect how certain proteins are made in the body. Interestingly, this glitch can also make it more likely for people to develop type 2 diabetes or have difficulty handling sugar in their body. It's like the body's sugar system isn't working perfectly.

Researchers wonder if there's a connection between these sugar-processing problems and the thinking difficulties some people experience. Could diabetes or similar issues be making the brain changes worse, leading to more cognitive problems? This study aims to explore this link using special brain scans and tests that look at how different parts of your brain are functioning and how well you can perform various thinking tasks. The goal is to better understand these connections, which could help in finding better ways to support people with Myotonic Dystrophy Type 1 in the future.

Key takeaways

This study explores how Myotonic Dystrophy Type 1 affects thinking skills.
It investigates a possible link between diabetes/sugar processing and brain changes.
Participation involves brain scans (MRI) and thinking tests.
It aims to better understand the condition for future patient support.
You won't receive new medications as part of this research.

Who may be eligible?

To join this study, you must have a confirmed diagnosis of Myotonic Dystrophy Type 1 from a genetic test. You need to be between 18 and 75 years old and be willing to participate fully. You must also be covered by the French social security system and be willing to give your informed consent, meaning you understand the study and agree to take part freely.

You cannot join if you have other serious brain conditions like epilepsy or a history of stroke, or if you've been diagnosed with dementia. Women who are pregnant, breastfeeding, or could become pregnant and are not using effective contraception cannot participate. If you have any medical condition that makes having an MRI scan unsafe, or if a doctor involved in the study thinks another serious health issue makes it unsafe for you to join, you wouldn't be able to take part. Also, if you are under legal guardianship or deprived of your freedom, you cannot be included.

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?
Are you between 18 and 75 years old?
Are you able to have an MRI scan safely (no metal implants that prevent it)?
Are you NOT pregnant or breastfeeding, and using birth control if you could get pregnant?
Do you NOT have a history of conditions like epilepsy, stroke, or dementia?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you'll need to attend a couple of appointments. One will involve special tests to check your thinking and memory skills, which will take about 3 hours. Another appointment will be for a brain scan called an MRI, which takes about 35 minutes. You won't be given any new medication as part of this study. The total time for these assessments will be around 3 hours and 35 minutes.

Potential risks and benefits

Taking part in this study may not directly benefit you, but the information gained could help doctors better understand Myotonic Dystrophy Type 1 and potentially lead to better treatments or support in the future. The main risks involve the MRI scan, which uses strong magnets and isn't suitable for everyone (e.g., if you have certain metal implants). There's also the time commitment and the possibility of feeling tired after the thinking tests. You are free to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (1)

Hopital Roger Salengro, CHU Lille
Verified postcode
Lille, France

Common questions

What is Myotonic Dystrophy Type 1?

It's a genetic muscle disease that can affect many parts of the body, including muscles, heart, and sometimes the brain.

What are 'cognitive disorders'?

These are difficulties with thinking skills like memory, planning, problem-solving, and attention.

What is an MRI scan?

MRI stands for Magnetic Resonance Imaging. It's a type of scan that uses strong magnets and radio waves to create detailed pictures of the inside of your body, in this case, your brain.

Will I get results from my tests?

The study aims to gather overall information. You should discuss with the study team whether individual results can be shared with you or your doctor, and how.

Do I have to stop taking my current medicines?

No, this study does not involve new medication and you should continue all your prescribed medicines unless otherwise advised by your own doctor.