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Advantages for
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How will I benefit from registering?

Benefits of participating in the registry include: 

  • We will inform you if (on the basis of the information that you and your doctor provide) you might be a suitable candidate for a certain clinical trial. 

  • We will also inform you if we receive any new information on your disorder which might be of interest to you - for example if we find better ways for caring for patients with FSHD. 

  • The data collected might also provide benefits for other patients with your disorder, for example by revealing statistics on how many people worldwide have the same condition, or providing information for researchers interested in the best standards of care for your disorder. 

The registry is intended as a public service for the benefit of patients living with FSHD. You will not receive any payment or any other financial benefit as a result of sharing your data with the registry. The results of research facilitated by the registry may be patentable or may have commercial potential. However, you will not receive patent rights and will not receive financial benefits from future commercial development. 

I want to take part in a clinical trial. If I register, is this guaranteed?

Although one of the main aims of this registry is to make it easier for patients to access research opportunities , there is no guarantee you will be eligible for, or  recruited to a clinical trial. Your Patient Questionnaire asks if you are interested in receiving details of trials that you may be eligible for. 

I do not want to take part in a clinical trial. Should I still register?

Yes, we encourage all people living with FSHD to register, even if you are not interested in clinical trials. Your information will still be useful to researchers who are trying to find out more information about patients living with FSHD, and we will still provide you with other information that might be relevant to your condition. Your Patient Questionnaire gives you the option to opt out of receiving details of trials.

Should I sign up with other registries or trial finding services?

This is your decision, but we would discourage sharing your sensitive personal data with private 'trial finder' companies. All legitimate research studies are listed on the publicly-accessible website clinicaltrials.gov, and if you’ve asked us to, the registry will let you know if you may match inclusion criteria. 

There is no additional benefit to registering with a private company, and it can be difficult to know exactly how they will be using your data. The UK FSHD registry has robust governance practices on data sharing, publishes all registry activities transparently, on this website, and is certified by an NHS ethics board. 

There are other FSHD registries in different parts of the world, but we encourage you to only register in your home country. Signing up to registries in other countries is not recommended –the UK registry shares data anonymously for global academic research, so double-registering may impact the accuracy of patient numbers reported, and would lead to unnecessary duplication of effort on your part. While we discourage registering elsewhere, if you are already signed up to any other registries, you can tell us in your questionnaire to help with efforts to de-duplicate global data.