New registry for people with FSH muscular dystrophy launched

Published Date
Neil Bennett

A new patient registry for individuals with facioscapulohumeral (FSH) muscular dystrophy, funded by the Muscular Dystrophy Campaign has been launched today. The new registry will allow clinicians and researchers to speed up the transition of treatments from the laboratory to the clinic by speeding up the recruitment process of people to take part in clinical trials and to better understand the condition.

Researchers have made considerable progress in recent years with the development of promising technologies that could provide the basis for potential treatments for facioscapulohumeral (FSH) muscular dystrophy. To find out whether any of these new technologies can be used to treat the symptoms of the condition, they must be tested in clinical trials. However, FSH muscular dystrophy is a rare disease and it can be difficult for clinicians to find sufficient patients quickly enough to start clinical trial without delay.

Today at the FSH information day, a registry for people with FSH was launched. The registry is funded by the Muscular Dystrophy Campaign and has been established by a team led by Professor Hanns Lochmüller at Newcastle University. The new online database will contain the information required to find people suitable for clinical trials. The information will also be used to develop standards of care and will give people a link to the research community, as well as the opportunity to access information directly relevant to their condition. All the data is stored in a secure server and is only accessible by members of the registry team.

We are calling on everybody in the UK with FSH muscular dystrophy to join the new registry. To join, you can visit the registry website, where you will be asked to fill in a short online questionnaire about your symptoms and family history. If you would like more details about the registry you can contact the registry curator, Libby Wood, on (0191 241 8640).

Suzanne Watt, who has FSH and is a member of the registry steering committee said:

There comes a point when clinical trials are needed to test the science and clinical trials eventually need people. Because FSH is relatively rare, those affected are widely dispersed. A central registry with up to date information on those willing to be recruited on trials will mean they can be contacted quickly and with the minimum of fuss. For me time is of the essence. I want there to be a treatment in my children’s lifetime and it is looking more and more possible. I urge those of you with FSH to be on the registry so we can fight this disease and win.

Professor Hanns Lochmüller, leader of the registry said:

The launch of the FSHD registry marks an exciting time for FSHD patients and we hope the registry will help facilitate clinical research in the UK and globally. Patients and clinicians have worked together to develop a registry that meet the needs of the FSHD community. I am pleased to be the lead for the registry and am looking forward to seeing it develop in the future.

Dr Marita Pohlschmidt, Director of Research at the Muscular Dystrophy Campaign said:

This registry offers real hope of increasing the pace of research into treatments for FSH muscular dystrophy. The condition is rare, and specialist health centres struggle to find enough patients to put together clinical trials quickly. It also offers us an opportunity to improve standards of healthcare and ensure they are consistent for all patients. Not only will people with FSH muscular dystrophy be able to provide information for the database, but also health professionals, who can log information on managing the condition. This is a major step forward.

Links and further information

To learn more about FSH

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To read about the research we are funding into FSH

It is only through your contributions that we can continue to fund the vital work that takes us closer to finding treatments and cures for muscle-wasting conditions. The Action on FSH Appeal has been established to support two critical research projects that will further our understanding of FSH. Please help us reach our £45,000 target by making a donation.

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