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Background and purpose

For the treatment of FSHD, promising new therapeutic strategies are currently being developed which need to be tested in clinical trials/research studies. This registry will make the recruitment of FSHD patients for trials or studies easier by helping to identify suitable patients for particular trials or studies and by enabling them to be contacted and informed quickly when there is a trial or study they might be interested in. More information

Target group

This registry is for patients living in the United Kingdom who are affected by Facioscapulohumeral dystrophy (FSHD type 1 or 2), with no age restrictions. This registry is primarily designed to collect specific information to help eligible patients access clinical trials of new therapies and other research opportunities. It also helps researchers learn more about the condition and find the best way of caring for patients living with FSHD.

Advantages for patients

If you are a patient affected by FSHD and register here, we can direct you to clinical trials and research results (such as new treatments) that might be of specific interest to you. In addition, by registering you are helping researchers obtain precise data about the prevalence of FSHD, which could be of benefit to all affected patients. More information

Patient Information Sheets

The Patient Information Sheets (PIS) can be viewed via the links below. You will be asked to confirm you have read and understood these before completing your consent form, so if you have any questions please contact the registry curator before registering. Please note than patients under the age of 16 must be registered by their parent/guardian who will provide consent on their behalf; the patient will be contacted to reconsent as an adult when they turn 16.

Registration process

Patients can register by clicking the registration link on the registry’s homepage. A step-by-step user guide can be found in the menu on the left of your screen, and you can also contact the registry team for any additional support. This is a dual-entry registry, which means that patients initiate the registration themselves and their selected healthcare professional can verify and add more information . 

In order to register, you should first read the appropriate Patient Information Sheet before signing up and consenting online. You will then enter your personal patient details and contact details, then fill in online questionnaires about how FSHD affects you as an individual. 

Data access

Staff in charge of the registry have access to your data and can get in touch if you might be suitable for a particular study. You can also nominate and authorise your neuromuscular specialist doctor and their support team to add additional information to your registry record. More information about data protection

Data updates

To make sure that the data in the registry is correct and valuable, it is essential it is updated regularly. We will send you emails once a year asking you to log on and complete a new questionnaire to record any changes in your condition, but you can easily update your data yourself at any time. If there are any major changes in your medical or contact details (for example a change of address or the loss of ambulation) that occur in between your annual updates, please notify us or login to update relevant details yourself.

Data protection

Your data is stored on a specially secured computer, which can be accessed only by selected people. Information that you enter online via the internet is encrypted while being transferred, so that it cannot be intercepted. More information about data protection