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RecruitingOBSERVATIONAL

TREMOR IN CHARCOT-MARIE-TOOTH

This study is investigating tremors, which are shaky movements, experienced by some people with Charcot-Marie-Tooth (CMT) disease. While tremors have been noticed in CMT patients, we don't fully understand why they occur or how much they impact daily life. Researchers will use special equipment like sticky patches on the skin and movement sensors to get a clearer picture of these tremors. They'll also ask questions about how the tremors affect activities. The goal is to better describe tremors in CMT, figure out their causes, and see if there's a link to genetic information. They will also compare people with CMT who have tremors to those who don't.

At a glance

Status
Recruiting
Sponsor
University Medical Center Goettingen
Enrolment target
75
Start
30 Jul 2024
Estimated completion
30 Oct 2026

What is this study about?

You might be aware that some people with Charcot-Marie-Tooth (CMT) disease experience tremors, which are uncontrolled shaky movements. While doctors have known about these tremors for a while, we don't fully understand why they happen or how much they affect a person's quality of life. This study aims to gather more information and shed light on these important questions.

The researchers will closely examine tremors in people with CMT. They will use special tools, such as sensors that stick to the skin (surface electromyography) and devices that record movement (accelerometer analysis). This will help them characterise the tremors in detail. They will also collect individual information about your health and how the tremor affects you. This includes asking you questions through questionnaires to understand how the tremor impacts your daily activities and your overall well-being.

To make sure they get very reliable information, experienced neurologists will conduct clinical examinations which will be video-recorded. They will also compare people with CMT who have tremors to CMT patients who don't. If information about your genes is available, they will look to see if certain genetic changes are linked to tremors or how the disease progresses. This research is important because it could lead to a better understanding of tremors in CMT and potentially help develop ways to manage them in the future.

Key takeaways

  • The study aims to understand tremors in people with Charcot-Marie-Tooth (CMT).
  • It will use special sensors and video recordings to observe tremors.
  • Questionnaires will capture how tremors affect daily life.
  • Researchers will look for links between tremors and genetic information.
  • A comparison group of CMT patients without tremors will be included.
  • Participation involves examinations and answering questions, with no new treatments.

Who may be eligible?

To be part of this study, you need to have a clinical diagnosis of Charcot-Marie-Tooth (CMT) disease that has been confirmed by genetic testing if you're an adult. You must be able to understand and complete the study assessments. Participants should be between 18 and 65 years old and be able to give your informed consent, which means agreeing to take part after fully understanding what’s involved.

There's also a group for healthy people who don't have CMT but are otherwise healthy. This group helps researchers compare information and better understand the tremors.

You won't be able to participate if you are pregnant or breastfeeding. Also, if you have any other significant long-term illnesses, either neurological (affecting the brain or nerves) or psychiatric (affecting mental health), or other serious medical conditions, you won't be able to join this study. This is to ensure the study results are clear and focused on CMT.

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.

  1. Are you between 18 and 65 years old?
  2. Do you have a clinical and genetically confirmed diagnosis of CMT?
  3. Are you able to understand and complete study tasks?
  4. Are you not pregnant or breastfeeding?
  5. Do you have no other major neurological, psychiatric, or serious medical conditions?
Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, you would undergo a clinical examination by an experienced neurologist. This examination will be video-recorded to help with accurate analysis of your tremors. Researchers will also use special equipment, like sticky pads on your skin, to measure muscle activity, and a movement sensor to record how your tremors behave. You will also be asked to complete questionnaires about how your tremors affect your daily life and your general well-being. There aren't any medications or long-term follow-up visits mentioned for this study, and the total duration would likely be a single visit or a few short visits for the assessments and information gathering.

Potential risks and benefits

Taking part in this study could help us learn more about tremors in people with CMT, which might lead to better understanding and possibly future treatments for others. While there are no direct personal benefits mentioned, you would be contributing to valuable medical research. Any risks are expected to be minimal; you might feel a little discomfort from the sticky pads used to measure muscle activity or from the examination. You are free to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (1)

  • University Medical Centre
    Verified postcode
    Göttingen, Germany· Recruiting

Common questions

What is the main goal of this study?

The main goal is to understand why tremors happen in people with CMT and how they affect daily life.

Will I receive any new treatment?

No, this study is observational, meaning it's focused on understanding tremors, not on testing new treatments.

What is a 'control group'?

A control group in this study will include CMT patients who do not have tremors, to help compare and understand the differences.

Will my genetic information be used?

If available, genetic information might be looked at to see if there are links between genes and tremors.

How long will my participation take?

The study involves a clinical examination, measurements, and questionnaires, likely completed in a single visit or a few short visits.

How to find out more

Michael W Sereda, Prof. MD

Always speak to your GP or specialist before deciding to take part in a study.

Interested in taking part?

Register your interest

Share your details and the research team for "TREMOR IN CHARCOT-MARIE-TOOTH…" will contact you if you may be eligible. Always speak to your GP before agreeing to take part.

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