Information for participants



FSHD is a rare disease; identifying enough people for a clinical trial can take years and this can delay the testing of potential new therapies. Registries allow people who may be eligible for certain trials to be contacted quickly and easily. Research in the laboratory has led to greater understanding of the genetic causes of FSHD, moving researchers towards the development of new therapies.

The UK FSHD Registry is:

  • A database of information about people with FSHD.
  • Designed to collect information that may identify participants for clinical trials.
  • Full of information that may help develop care standards, to help improve the care people receive in their local community.
  • A link to the research community, providing the opportunity for you to receive information directly relevant to you and your condition.
  • A source of information for doctors and scientists to learn more about FSHD

Anyone with FSHD can sign up to the registry. By signing up you will be asked to enter information about yourself and your FSHD. We will ask about your symptoms of FSHD and other things affecting your day to day life. You will be asked to update this information once a year.  

Dr Chiara Marini-Bettolo is responsible for looking after your data. Any researchers or companies who want access to your information will have been approved by the registries steering committee and have approval from an ethics board. Your personal details, such as name and address will never be given to researchers or companies.

More information

Patient Information & Consent Forms