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?

Nil

2.    How many patients have been treated in the last 4 months (September to December 2022) with the following products:

Evrysdi (Risdiplam) - total patients               

Nil

Spinraza (Nusinersen) - total patients

Nil

Zolgensma (Onasemnogene) - total patients

Nil

Evrysdi (Risdiplam) - new* patients              

Nil

Spinraza (Nusinersen) - new* patients         

Nil

Zolgensma (Onasemnogene) - new* patients         

Nil

*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 2022).

3.    Of the total patients treated in the last 4 months (September to December 2022) with Evrysdi (Risdiplam), please provide the number of patients that were treated with Spinraza (Nusinersen) in the previous 4 months (May to August 2022).     

Nil

4.    Of the total patients treated in the last 4 months (September to December 2022) with Zolgensma (Onasemnogene), please provide the number of patients that were treated with Spinraza (Nusinersen) in the previous 4 months (May to August 2022).    

Nil

5.    How many patients have been treated with Zolgensma (Onasemnogene) in the last 12 months (January to December 2022)?    

Nil