How Can My Newly Diagnosed Child Access Zolgensma?
How Can My Newly Diagnosed Child Access Zolgensma?
Page last updated: 26th February 2022
Your child needs to be seen by a Specialist Paediatric Centre (also referred to as a Regional Neuromuscular Centre – RNMC).
See the full list here and the tab below.
Your clinical team at the Specialist Centre will discuss all appropriate treatment options with you. The most optimal treatment for your child will be based on a number of medical considerations, and your choice.
If you jointly agree on Zolgensma treatment, your clinician will make a direct referral to one of the following infusion centres which is where treatment takes place. These are:
- Evelina London Children’s Hospital (part of Guy’s & St Thomas’ NHS Foundation Trust) with a sub-hub at Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH)
- Manchester University NHS Foundation Trust
- Sheffield Children’s NHS Foundation Trust
- University Hospitals Bristol and Weston NHS Foundation Trust
Treatment would be at one of these infusion centres but first of all, your specialist team has to make a referral for your child to be assessed for their suitability for treatment by the National Multidisciplinary Team (NMDT). The referral includes information about the impact of your child’s SMA and their health in general. Communication from the NMDT about children is to consultants in referring Specialist Neuromuscular Centres who will contact families.