RecruitingOBSERVATIONAL

The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry

This study is creating a special list, called a registry, for people in the UK who have Facioscapulohumeral Muscular Dystrophy (FSHD). FSHD is a muscle-weakening condition that affects thousands in the UK. By collecting information from people with FSHD, this registry helps doctors and researchers understand the condition better and track how it affects people over time. It also acts as a hub to find volunteers who might be interested in taking part in future research studies or trials for potential new medicines. It's a key step in trying to improve care and find new treatments for FSHD.

At a glance

Status

Recruiting

Sponsor

Newcastle University

Enrolment target

1,018

Start

01 May 2013

Estimated completion

01 Jan 2040

Facioscapulohumeral Muscular Dystrophy

What is this study about?

This registry is a really important project that's collecting information about people in the UK who have a type of muscle weakness called Facioscapulohumeral Muscular Dystrophy, or FSHD. FSHD affects muscles in the face, shoulders, and upper arms, but can affect other parts of the body too. It's thought to affect around 3,000 people in the UK, making it one of the more common forms of muscular dystrophy.

The main goal of this registry is to help us learn more about FSHD. By gathering details from people living with the condition, researchers can better understand how it progresses, how it affects daily life, and what challenges people face. This knowledge is crucial for developing better ways to help people with FSHD and for identifying what needs to be researched next.

The registry also plays a vital role in finding people who might be interested in taking part in future clinical trials. Clinical trials are studies that test new treatments or medicines. By being a part of this registry, you could be contacted about opportunities to participate in research that aims to find new ways to manage or even treat FSHD. It’s an ongoing effort, and people are asked to update their information each year to keep it current. Muscular Dystrophy UK is supporting this important work.

Key takeaways

Helps researchers understand FSHD better.
Could link you to future treatment trials.
Involves sharing medical information online.
Updating your details once a year is requested.
Supports by Muscular Dystrophy UK.

Who may be eligible?

To join this registry, you need to live in the United Kingdom and have received a diagnosis of Facioscapulohumeral Muscular Dystrophy (FSHD) from a doctor. If you're currently in the process of getting a diagnosis for FSHD, you might also be able to join.

However, you won't be able to join if you live outside of the UK. Also, if you have been diagnosed with a different type of muscular dystrophy or a different muscle condition that isn't FSHD, then this particular registry isn't right for you. It's specifically for people with FSHD.

Quick self-check

Do you live in the United Kingdom?
Have you been diagnosed with Facioscapulohumeral Muscular Dystrophy (FSHD)?
Are you currently waiting for an FSHD diagnosis?
Do you NOT have a different type of muscle condition that isn't FSHD?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to join, you'll first go through a consent process to make sure you understand what you're agreeing to. Then, you'll be able to enter your information onto the registry's secure website. This is mostly done by you, answering questions about your condition and how it affects you. You can see examples of these questions on the registry website before you even sign up.

Once you're in the registry, you'll be asked to update your information once a year. This helps keep the details current and useful for researchers. Optionally, with your permission, if specialist medical or genetic details are needed, your doctor or nurse who looks after you might be asked to provide some extra information. There are no clinic visits, medication, or specific treatments involved in being part of this registry.

Potential risks and benefits

A potential benefit of joining is that your information will help doctors and researchers understand FSHD better, which could lead to improved care and new treatments in the future. You might also be contacted about opportunities to take part in future research studies. The main potential risk is a small chance of your personal information being misused, though every effort is made to keep your data secure and private. You are free to withdraw your information from the registry at any time, without giving a reason, and it won't affect your medical care.

Locations (1)

John Walton Muscular Dystrophy Research Centre
Newcastle upon Tyne, United Kingdom· Recruiting

Common questions

What is the purpose of this registry?

It's collecting information from people with FSHD in the UK to help us understand the condition better and find volunteers for future research studies and trials.

Who is running this registry?

Muscular Dystrophy UK is supporting this registry, and it's managed by scientists and doctors involved in FSHD research.

Do I have to take any medicine or go to appointments?

No, joining the registry doesn't involve any treatments, medications, or clinic appointments. You just provide information online.

How often do I need to update my information?

You'll be asked to review and update your information once a year to keep it current.

Is my personal information safe?

Yes, great care is taken to protect your personal details, and all necessary approvals are in place to ensure your data is handled securely and privately.

How to find out more

Registry Project Manager and Curator

helen.walker2@newcastle.ac.uk 0191 2418640 Official trial record

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