About the registry
Here you will find out more information about why we have a registry and how your data will be used.
What is a patient registry?
Patient registries are databases that contain information about individuals affected by a particular condition. Most registries focus on the information that is needed to find patients eligible for clinical trials and research studies, but they have many other benefits.
What is the UK FSHD patient registry?
The UK FSHD registry collects information about people in the UK with any form of FSHD. This information includes your personal details, your genetic diagnosis and a basic set of data about how your condition affects you.
How do I benefit from registering?
The registry will give you a link to the research community and the opportunity to find out about care standards and other information directly relevant for their condition.
The registry also provides a potential opportunity to be involved in clinical trials and research studes.
Why is a patient registry needed?
Scientific advances over recent years have led to substantial changes in the treatment of many neuromuscular diseases, including FSHD. Because FSHD is a rare disease, it can be very difficult to find enough patients to run the clinical trials that are needed to test whether a treatment really works or not. Having as many people as possible in the registry allows potential trial participants to be contacted quickly and efficiently.
As well as providing information for clinical trials, collecting data from people with FSHD across the world provides a lot of valuable information about the disease and the way it is dealt with in different countries.
Who can register?
People with FSHD, or the parents or guardians of children under 16 years of age with FSHD living in the UK can register.
How do you register?
Registration involves completing an online questionnaire; you can view the questions you will be asked here.
Is my doctor involved?
You will be asked to nominate your doctor when completing the questionnaire. This is so your doctor can confirm what type of FSHD you have by including details from your genetic report. This will in not affect the level of care you receive.
Are my details safe?
All data you give to the registry is stored on a secure server (protected in a similar way to online bank accounts) and only specially appointed staff have access to it. The data remains your property and you have the right to withdraw it at any time.
Who looks after my data?
The UK FSHD Patient Registry is looked after by Dr Chiara Marini Bettolo at Newcastle University. A Steering Committee made up of people with FSHD, doctors and researchers are together involved in any decisions regarding your data.
If you don’t give my details away, how will I be contacted about trials?
Researchers and companies may contact the registry to see if any patients suitable for their clinical trial are registered. We will never give them any of your personal details. If we think you may be suitable we will contact you and you will be able to decide if you wish to contact them directly for more information.
I don’t want to be in a clinical trial: should I still register?
You can still register even if you don’t want to take part in a trial. Your information will still be useful to researchers who are trying to find out more about people with FSHD, and the registry can still provide you with other information that might be relevant to your disease.
Who has allowed this data to be collected?
This registry has been approved by Newcastle and North East1 Research Ethics Council (ref 18/NE/0288). It also has the support of the Medical Research Council and Muscular Dystrophy UK