Spinal Muscular Atrophy - FOI Response Register

We have a freedom of information request related to the diagnosis and treatment of Spinal Muscular Atrophy. Your answers to the following questions would be greatly appreciated.

1. How many patients have a current diagnosis for Spinal Muscular Atrophy (ICD-10 Code G12.0, G12.1, G12.8 and G12.9) at your trust?

NHS Shetland uses the ICD 10 coding system in secondary care. Figures provided are for the number of unique inpatients where the given ICD 10 code was listed as the Main Condition or Other Condition.

<5

2. How many patients have been treated in the last 4 months (January to April 2025) with the following products:

Evrysdi (Risdiplam) - total patients -

Spinraza (Nusinersen) - total patients -

Zolgensma (Onasemnogene) - total patients -

Evrysdi (Risdiplam) – new* patients -

Spinraza (Nusinersen) – new* patients -

Zolgensma (Onasemnogene) – new* patients –

Nil for all

*new patients are defined as patients who were not treated with any of Spinraza (Nusinersen), Evrysdi (Risdiplam) or Zolgensma (Onasemnogene) in the previous 4-month period (September to December 2024).

3. Of the total patients treated in the last 4 months (January to April 2025) with Evrysdi (Risdiplam), please provide the number of patients that were treated with Spinraza (Nusinersen) in the previous 4 months (September to December 2024).

Not applicable

4. Of the total patients treated in the last 4 months (January to April 2025) with Zolgensma (Onasemnogene), please provide the number of patients that were treated with Spinraza (Nusinersen) in the previous 4 months (September to December 2024).

Not applicable

5. Of the total patients treated in the last 4 months (January to April 2025) with Spinraza (Nusinersen) please provide the number of patients that were treated with Evrysdi (Risdiplam) in the previous 4 months (September to December 2024).

Not applicable

Where we have given <5 answers, this is because NHS Shetland considers that providing more specific information carries a high risk of identifying individuals. As such and in accordance with FOISA s 16(1), NHS Shetland confirms that it holds the information requested but that it is exempt from disclosure under FOISA s 38(1)(b) as read with s 38 (2A) as the information constitutes personal data and disclosure would breach the confidentiality of the data subjects