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UK SMA Patient Registry

Spinal Muscular Atrophy Support UK funds the UK SMA patient registry.

 

Meet Jo, the Patient Registry Curator 

 

Read the FAQs below to find out more about the registry and how SMA Support UK is involved:

What is a patient registry for SMA?

A database of genetic and clinical information (or data) about people affected by SMA.

How is the information used?

Promising new treatments for SMA are being developed. These need to be tested in clinical trials but because SMA is a rare condition, it can sometimes take years to find enough patients for a clinical trial. The Patient Registry can speed this up. The Registry also helps specialists gain more knowledge about the condition and the number of people affected by SMA. This information helps us to develop and improve worldwide standards of care for people with SMA.

What information is collected?

  • People's personal details such as name, address, date of birth and gender, so that they can be identified and contacted
  • People's clinical and genetic information, because researchers need this to develop treatments

What other benefits are there?

If you register, you will be told about clinical trials and other studies you may wish to join, but you are not obliged to do so. You will receive newsletters with information relevant to SMA about latest research developments and about TREAT-NMD activities. Collected information can help improve standards of care for people with SMA.

Is my data safe?

All the information is stored in a secure server which is protected in a similar way to online bank accounts. Only specially appointed registry staff can look at your information. The UK SMA Patient Registry is part of the TREAT-NMD Global SMA Registry, which collects medical information from national SMA registries worldwide. When your data is transferred from the UK SMA Patient Registry, you personal details do not go with it. Your information in the global registry is identified only by a code. You can be sure that your contact details are safe.

How is Spinal Muscular Atrophy Support UK involved with the UK SMA Patient Registry?

Spinal Muscular Atrophy Support UK funds the UK SMA Patient Registry. By doing this, it is supporting clinical research and ensuring all people with SMA in the UK can be informed about research, clinical trials and best-practice care. Information you provide to the UK SMA Patient Registry is not shared with SMA Support UK.

Who should register?

Adults and children with SMA and a confirmed mutation in the SMN1 gene who live in the UK or Ireland. SMA is a rare condition, every single person counts!

How do I register?

You can register online and create an account so that you can view and update your information at any time. If a person is under 16, a parent or guardian much create an account on their behalf. 

Registration is voluntary and at all times the information remains your property. You have the right to withdraw your information at any time.