Children's Neurology (brain and nervous system) Research

Spinal Muscular Atrophy Research and Clinical Hub UK (SMA REACH UK)

Who is it for? Children with Spinal Muscular Atrophy (SMA) type I, II or III who are older than 3 months of age

Why? You/your child requires the expert care of medical and therapy teams for the long-term management of SMA. To help deliver the best care, we would like to collect and record information, which will help us optimise management, not only for you/your child, but also for all children/adults with SMA in the UK. 

We will use the information we collect to help us:

• Collect accurate details about the course of Spinal Muscular Atrophy, and its response to management
• Monitor medical and therapy care to make sure it is always up to date
• Plan and develop services for better management of Spinal Muscular Atrophy
• Pilot new assessment tools with the aim to develop more sensitive SMA specific scales
• Undertake audits, and produce reports that will improve our knowledge of the natural history of SMA, with the clear consequence of implementing the National standards of care, as well as facilitate the preparation of personalized national and international clinical trials. 

To find out more: Contact your Neuromuscular Consultant Dr Nahin Hussain or Specialist Neuromuscular Care Advisor Yvonne Julien

or take a look at the SMA REACH UK website

We have a separate page specifically for Epilepsy studies. 

Please click on the link above to find out more.

There may also be other neurology studies, which we haven’t listed here.

Please ask your Doctor about research that may be suitable for you or your child.

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