RecruitingOBSERVATIONAL

Vitaccess Real MG Registry

This study, called Vitaccess Real MG Registry, aims to understand myasthenia gravis (MG) better over 10 years. It will collect information on how the condition affects people's daily lives, their symptoms, and how their treatments are working. Researchers will gather this information from patients and their doctors. It's an observational study, meaning it won't involve new medicines or treatments; instead, it will observe what's already happening. The goal is to get a clearer picture of living with MG to help improve care in the future. Around 600 people from the US and UK are expected to take part. This information will help doctors and researchers learn more about how MG affects people over time.

At a glance

Status

Recruiting

Sponsor

Vitaccess Ltd

Enrolment target

600

Start

31 Jul 2024

Estimated completion

01 Jul 2034

Myasthenia Gravis

What is this study about?

The Vitaccess Real MG Registry is a long-term study looking at myasthenia gravis (MG). For up to 10 years, it will gather information about how MG affects people, how their treatments are working, and what their daily life is like. This isn't a study where you try new medicines; instead, it observes and records information about your health as you live with MG and receive your usual care.

The main idea is to collect a lot of information from various sources to get a full picture. This includes details you share about your symptoms, how MG impacts your daily activities, and your general well-being. Doctors will also share information from your medical records. By linking these different pieces of information, researchers hope to understand MG much better.

Ultimately, the goal is to use this information to improve care for people with MG in the future. By seeing how the condition changes over many years and how different treatments affect people, doctors and researchers can develop better ways to support patients and manage this condition.

Key takeaways

It's a long-term study (up to 10 years) about myasthenia gravis (MG).
It gathers information on how MG affects daily life and how treatments work.
You won't receive new medicines; you'll continue your usual care.
Information is collected from you (online surveys) and your medical records.
It helps researchers understand MG better to improve future care.
You can stop participating at any time.

Who may be eligible?

To join this study, you need to be an adult (age 18 or older) and have received a clear diagnosis of myasthenia gravis (MG) from your doctor. You also need to live in one of the countries where the study is taking place, which currently includes the US and the UK. Importantly, you'll need access to a smartphone, tablet, or computer, as some of the information will be collected online.

You must also be willing and able to understand the study information and give your agreement (consent) to take part in your own language. Before joining, if you are currently participating in another clinical trial (a study testing a new medicine or treatment), you would not be able to join this registry. This is because the study wants to see how MG affects people undergoing their usual care, not while they are part of another research project.

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?
Have you been diagnosed with myasthenia gravis (MG)?
Do you live in the US or the UK?
Do you have access to a smartphone, tablet, or computer?
Are you currently not taking part in another clinical trial?
Are you willing to share information about your health over time?

Answer every question to see your result.

What does participation involve?

If you decide to take part, you'll be asked to provide information about your health and how MG affects you. This will be done through a special website or app that you can access on your phone, tablet, or computer. You'll answer survey questions about your symptoms, daily activities, tiredness, and overall quality of life when you start the study and then regularly over time for up to 10 years.

Your clinical team will also share information from your medical records with the study, updating it about every six months. This means you do not need to make extra visits to the clinic just for the study; the information will be collected during your regular check-ups. The aim is for the study to fit in with your normal medical appointments as much as possible, without adding extra burden.

Potential risks and benefits

Taking part in this study does not involve trying new medicines or treatments, so there are no direct medical risks from the study itself. The main benefit is knowing that the information you provide could help doctors and researchers understand myasthenia gravis better, potentially leading to improved care for patients in the future. The primary 'risk' is the time and effort involved in answering surveys. You are free to withdraw from the study at any time without giving a reason, and this will not affect your medical care.

Locations (8)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

UCI Health
Verified postcode
Orange, United States· Recruiting
HSHS St. Elizabeth's Hospital
Verified postcode
O'Fallon, United States· Recruiting
UK HealthCare - University of Kentucky
Verified postcode
Lexington, United States· Recruiting
Neurology Associates of South Jersey
Verified postcode
Lumberton, United States· Recruiting
Medical University South Carolina
Verified postcode
Charleston, United States· Recruiting
University of Texas Health Science Center at Houston
Verified postcode
Houston, United States· Recruiting
Vitaccess Ltd
Verified postcode
London, United Kingdom· Recruiting
University Hospitals Birmingham
Verified postcode
Birmingham, United Kingdom· Recruiting

Common questions

What is myasthenia gravis (MG)?

Myasthenia gravis is a long-term (chronic) condition that causes muscle weakness. It can affect your eyes, face, throat, and limbs.

Will I have to take new medicines in this study?

No, this is an observational study. You will continue with your usual medical care and medicines as prescribed by your doctor. No new medicines are given.

How long will I be in the study?

You could be in the study for up to 10 years, but you can leave at any time if you wish.

Do I have to visit the clinic more often if I join?

No, the study aims to collect information during your regular doctor or clinic visits, so you shouldn't need extra appointments just for the study.

Who will see my information?

Your information will be kept private. Researchers will look at it to understand MG, but your name won't be linked to the results shown to the public.

How to find out more

Mark JW Larkin, PhD

mark.larkin@vitaccess.com +44 1865818983 Official trial record

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