Spinal Muscular Atrophy - FOI Response Register

FoI Number
2024-611
Subject
Spinal Muscular Atrophy
Date Received
14/01/2025
Request and Response
  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 for inpatient admissions. Figures provided below are for the number of unique patients where the given ICD 10 code has been listed as a Main Condition or Other Condition.

Nil

  1. How many patients have been treated in the last 4 months (September to December 2024) 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  

*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 (May to August 2024).

The answer to all points of Q2 is Zero

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

N/A

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

N/A

  1. How many patients have been treated with Zolgensma (Onasemnogene) in the last 12 months (January to December 2024)?

ZERO