A Prospective Longitudinal Study in Adults With Multifocal Motor Neuropathy
This ongoing study is looking for adults in the UK who have a condition called Multifocal Motor Neuropathy (MMN). Its main goal is to follow these individuals over time to learn more about how MMN affects their health, their quality of life, and the types of healthcare they use. Participants will continue to receive their usual care from their doctor, and no new treatments or medications will be given as part of the study. There's an optional extra visit shortly after the study starts to collect some additional information. By understanding MMN better, researchers hope to improve care for people living with this condition in the future.
At a glance
What is this study about?
This study is for people living with a condition called Multifocal Motor Neuropathy, often shortened to MMN. MMN is a rare, long-term condition that affects your nerves, leading to muscle weakness, usually in your arms and hands, but sometimes in your legs. It's often diagnosed by a specialist doctor.
The main aim of this study is to observe and collect information from people with MMN over a period of time. This isn't a study where new medications are tested. Instead, researchers want to gather a deeper understanding of how the condition progresses, how it impacts your daily life, and how often you need to see doctors or use other healthcare services. They will look at things like your general health, how well you can do daily activities, and your overall sense of well-being.
By carefully watching and collecting information from a group of people with MMN, the study hopes to build a clearer picture of the condition. This information is really important because it can help doctors and healthcare providers better understand the needs of people with MMN, which could lead to improved care and support in the future.
Key takeaways
- No new medicines are given in this study.
- The study aims to understand MMN better over time.
- Participation involves your usual medical visits, plus one optional extra visit.
- It's for adults (18+) diagnosed with MMN by a specialist.
- You can stop participating at any time without affecting your care.
Who may be eligible?
To join this study, you need to be an adult in the UK who is at least the legal age to agree to take part in studies. You must also be able to understand what the study involves and be willing to follow its simple instructions.
The most important requirement is that you must have been diagnosed with Multifocal Motor Neuropathy (MMN) by a specialist nerve doctor (neurologist) or a doctor who specialises in muscle and nerve conditions.
There are a few reasons why someone might not be able to join. For example, if you're currently taking part in another study where you're receiving an experimental medicine, you wouldn't be able to join this one. Also, if you have other serious health problems that might make it hard to properly check your MMN or understand its effects, you might not be eligible. The study team needs to make sure they can clearly see how MMN is affecting you without other conditions getting in the way.
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 diagnosis of Multifocal Motor Neuropathy (MMN) from a specialist doctor?
- Are you able to understand and agree to take part in a study?
- Are you currently not taking part in another study that involves an experimental medicine?
What does participation involve?
If you decide to take part in this study, you will essentially continue with your usual medical appointments and care for your MMN as you normally would. The study doesn't ask you to change your existing treatment plan or doctors. There are no new medications or treatments given as part of this study.
The main way you participate is by allowing the study team to collect information from your regular doctor visits. There might be an optional extra visit to the clinic between 7 and 14 days after you start the study. During this optional visit, some extra samples, like blood, might be taken for research to look at special markers (biomarkers) related to your condition. The total duration of your participation will depend on how long the study continues to collect data, but you'll be told about this when you consider joining.
Potential risks and benefits
Locations (114)
- Neuromuscular Clinical and Research CenterVerified postcodePhoenix, United States
- HonorHealth Neurology - Bob Bove Neuroscience InstituteVerified postcodeScottsdale, United States
- UCI Health - ALS and Neuromuscular CenterVerified postcodeOrange, United States
- Stanford Medicine Health Care - Stanford Neuroscience Health CenterVerified postcodePalo Alto, United States
- The Neurology GroupVerified postcodePomona, United States
- Eisenhower Health - Rancho Mirage Medical CenterVerified postcodeRancho Mirage, United States
- UC Davis Health - Lawrence J. Ellison Ambulatory Care CenterVerified postcodeSacramento, United States
- UCSF Health - UCSF Medical CenterVerified postcodeSan Francisco, United States
- University of Colorado - Anschutz Medical CampusVerified postcodeAurora, United States
- YaleNewHavenHealth - Yale New Haven HospitalVerified postcodeNew Haven, United States
- MedStar Georgetown University HospitalVerified postcodeWashington D.C., United States
- Medsol Clinical Research Center IncVerified postcodePort Charlotte, United States
Common questions
What is Multifocal Motor Neuropathy (MMN)?
MMN is a rare condition that affects your nerves, often leading to muscle weakness, usually in your arms and hands.
Will I receive any new medicine in this study?
No, this study does not involve giving any new medicines. You will continue with your usual medical care.
How long will I need to be in the study?
The study will follow participants over time, and the exact duration will be discussed with you when you consider joining.
Do I have to attend extra appointments?
You will attend your regular doctor appointments. There is one optional extra visit shortly after you start the study.
Can I leave the study if I change my mind?
Yes, you can choose to leave the study at any time, and it will not affect your medical care.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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