fshd-registry.org

Facioscapulohumeral Muscular Dystrophy - UK Patient Registry for FSHD

UK Patient Registry for FSHD. UK FSHD Patient Registry. To help advance the research and development of treatment, therapies and care for all those diagnosed with FSHD. More information for particpants and their families. More infomormation for professional users. There are currently 885 patients registered in this database. The registry is funded by Muscular Dystrophy UK. With support from the John Walton Muscular Dystrophy Research Centre. And MRC Centre for Neuromuscular Disease.

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Facioscapulohumeral Muscular Dystrophy - UK Patient Registry for FSHD | fshd-registry.org Reviews

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UK Patient Registry for FSHD. UK FSHD Patient Registry. To help advance the research and development of treatment, therapies and care for all those diagnosed with FSHD. More information for particpants and their families. More infomormation for professional users. There are currently 885 patients registered in this database. The registry is funded by Muscular Dystrophy UK. With support from the John Walton Muscular Dystrophy Research Centre. And MRC Centre for Neuromuscular Disease.

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1 the network

2 fshd registry

3 information for participants

4 information for professionals

5 information for researchers

6 useful organisations

7 newsletters

8 glossary

9 treat nmd alliance

10 legal notice

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Facioscapulohumeral Muscular Dystrophy - UK Patient Registry for FSHD | fshd-registry.org Reviews

https://fshd-registry.org

UK Patient Registry for FSHD. UK FSHD Patient Registry. To help advance the research and development of treatment, therapies and care for all those diagnosed with FSHD. More information for particpants and their families. More infomormation for professional users. There are currently 885 patients registered in this database. The registry is funded by Muscular Dystrophy UK. With support from the John Walton Muscular Dystrophy Research Centre. And MRC Centre for Neuromuscular Disease.

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fshd-registry.org

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Data protection - UK Patient Registry for FSHD

https://www.fshd-registry.org/uk/participants/data_protection/index.en.html

UK Patient Registry for FSHD. Where will my data be stored? Who will have access to my medical records? Staff in charge of the registry might need to gain access to your medical records to obtain information necessary to the project (for example we will need to ask your geneticist/physician for a copy of your genetic report and also information on your respiratory and cardiac function). How will I be identified in the registry? Will my data be kept confidential? Creating a registry requires the existence...

2

Information for participants - UK Patient Registry for FSHD

https://www.fshd-registry.org/uk/participants/index.en.html

UK Patient Registry for FSHD. 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. Profess...

3

Glossary - UK Patient Registry for FSHD

https://www.fshd-registry.org/uk/Glossary/index.en.html

UK Patient Registry for FSHD. Here you should find an explanation of selected words or phrases that have been used throughout the UK FSHD Patient Registry. A trial is a rigorously controlled test to determine the effectiveness of a treatment, therapy or device involving patients with a particular disease. Giving permission for something or agreeing it can be done. A collection of information often held on a computer. The term researchers and doctors use to describe how a person feels about their life, of...

4

Facioscapulohumeral Muscular Dystrophy - UK Patient Registry for FSHD

https://www.fshd-registry.org/uk/index.en.html

UK Patient Registry for FSHD. UK FSHD Patient Registry. To help advance the research and development of treatment, therapies and care for all those diagnosed with FSHD. More information for particpants and their families. More infomormation for professional users. There are currently 670 patients registered in this database. The registry is funded by the Muscular Dystrophy Campaign. With support from the TREAT-NMD Alliance. And MRC Centre for Neuromuscular Disease.

5

Newsletters - UK Patient Registry for FSHD

https://www.fshd-registry.org/uk/news/index.en.html

UK Patient Registry for FSHD. You will be able to find copies of all published Newsletters in this section. All participating doctors and patients will receive a copy of the newsletter by e-mail once published. An information leaflet about the registry is available to download here. You can show this to your family and friends. Please show it to your doctor if they would like more information.

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Facioscapulohumeral Muscular Dystrophy - UK Patient Registry for FSHD

UK Patient Registry for FSHD. UK FSHD Patient Registry. To help advance the research and development of treatment, therapies and care for all those diagnosed with FSHD. More information for particpants and their families. More infomormation for professional users. There are currently 885 patients registered in this database. The registry is funded by Muscular Dystrophy UK. With support from the John Walton Muscular Dystrophy Research Centre. And MRC Centre for Neuromuscular Disease.

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