Rare Diseases - FOI Response Register

FoI Number
2023-415
Subject
Rare Diseases
Date Received
17/10/2023
Request and Response

Please answer the following questions –

  1. In the past 12 months, how many patients have been admitted as inpatients for each of the following conditions* (primary or secondary diagnosis)?
  • Adult Onset Stills Disease (AOSD) – ICD10 code M06.1
  • Juvenile Arthritis with Systemic Onset (SJIA) – ICD10 code M08.2
  • Periodic Fever Syndromes including Familial Mediterranean Fever (FMF), Tumour Necrosis factor Associated Periodic Syndromes (TRAPS) or Melvonate Kinase Deficiency (MKD) – ICD10 code E85.0
  • Cryoprin-associated Periodic Syndromes (CAPS) – ICD10 code not available

In accordance with FOISA s 17(1), NHS Shetland confirms that it does not hold the information requested.

 *In case you do not treat any condition, please provide the name of the trust you refer these patients to.

  1. How many patients has your trust/health board treated with Anakinra (Kineret) in the past 12 months, for each of the following:      

No use of this medicine

  • Any medical condition                   
  • Rheumatoid Arthritis
  • Adult Onset Stills Disease (AOSD)
  • Juvenile Arthritis with Systemic Onset (SJIA)
  • Periodic Fever Syndromes (FMF, TRAPS or MKD)
  • Cryoprin-associated Periodic Syndromes (CAPS)
  1. How many patients has your trust/health board treated with Canakinumab (Ilaris) in the past 12 months, for each of the following:

Nil

  • Any medical condition
  • Adult Onset Stills Disease (AOSD)
  • Juvenile Arthritis with Systemic Onset (SJIA)
  • Periodic Fever Syndromes (FMF, TRAPS or MKD)
  • Cryoprin-associated Periodic Syndromes (CAPS)
  1. How many patients has your trust/health board treated with Tocilizumab in the past 12 months, for each of the following:
  • Any medical condition

12

  • Adult Onset Stills Disease (AOSD)          
  • Juvenile Arthritis with Systemic Onset (SJIA)    
  • Periodic Fever Syndromes (FMF, TRAPS or MKD)      
  • Cryoprin-associated Periodic Syndromes (CAPS)        

     

  1. How many patients has your trust/health board treated with Etanercept in the past 12 months, for each of the following:
  • Any medical condition

      17

  • Adult Onset Stills Disease (AOSD)  
  • Juvenile Arthritis with Systemic Onset (SJIA)
  • Periodic Fever Syndromes (FMF, TRAPS or MKD)                  
  • Cryoprin-associated Periodic Syndromes (CAPS)