Spinal Muscular Atrophy: Paediatric Care Pathway

This updated pathway is endorsed by SMA Reach UK and was supported by a grant from Roche Products Limited. Roche Products Limited has had no control over the content other than a factual accuracy check. The original 2021 version of the pathway was initiated with sponsorship from Biogen Idec Ltd. Biogen Idec Ltd has had no control over the educational content of this activity.

Early recognition, diagnosis and access to treatment are essential to ensure the best possible quality of life and health outcomes for an infant with spinal muscular atrophy (SMA).

In paediatric SMA, every day counts - our new pathway can help understand why, and how to make it count for good.

The original version of this animation (published May 2021) was supported by sponsorship from Biogen Idec Ltd. Biogen Idec Ltd has had no control over the educational content of the original or updated version of this animation.

This updated version of the animation (published Nov 2022) has been funded by sponsorship from Novartis Gene Therapies EU Limited and supported by Roche Products Limited. Neither Novartis Gene Therapies EU limited nor Roche Products Limited have had no control over the educational content of this activity.

Our thanks to the following individuals who contributed to the development of the integrated care pathway:

• Sian Ball, Neuromuscular Care Advisor, Sheffield Children’s NHS Foundation Trust
• Lisa Edel, Respiratory Neuromuscular Physiotherapist, Great Ormond Street Hospital for Children NHS Foundation Trust
• Dr Vasantha Gowda, Consultant Paediatric Neurologist, Guy’s and St Thomas’ NHS Foundation Trust
• Janet Johnson, Neuromuscular Specialist Practitioner, Manchester University NHS Foundation Trust
• Joela Mathews, Neuroscience Pharmacist, Barts Health NHS Trust
• Heather McMurchie, Paediatric Neuromuscular Physiotherapist, University Hospitals Birmingham NHS Foundation Trust
• Dr Min Ong, Paediatric Neurology Consultant, Sheffield Children’s NHS Foundation Trust
• Dr Sithara Ramdas, Consultant Paediatric Neurologist, Oxford University Hospitals NHS Foundation Trust
• Annemarie Rohwer, Clinical Research Physiotherapist, Great Ormond Street Hospital for Children NHS Foundation Trust
• Mariacristina Scoto, Senior Clinical Research Associate, Great Ormond Street Hospital for Children NHS Foundation Trust
• Kirstie Spencer, Clinical Care Advisor, Nottingham University Hospitals NHS Trust
• Sandya Tirupathi, Consultant Paediatric Neurologist, Belfast Health and Social Care Trust
• Dr Elizabeth Wraige, Consultant Paediatric Neurologist, Guy’s and St Thomas’ NHS Foundation Trust

Facilitator

• Sue Thomas, Independent Healthcare Consultant

Pathway design

• Sarah Mehta, Medical Writer

SMA in reality – and why we need a national pathway