All questions are shown as received by the Trust.
Q1. In the past 12 months, how many patients have been admitted as inpatients for each of the following conditions* (primary or secondary diagnosis)?
a. Adult Onset Stills Disease (AOSD) – ICD10 code M06.1
b. Juvenile Arthritis with Systemic Onset (SJIA) – ICD10 code M08.2
c. Periodic Fever Syndromes including Familial Mediterranean Fever (FMF), Tumor Necrosis factor Associated Periodic Syndromes (TRAPS) or Melvonate Kinase Deficiency (MKD) – ICD10 code E85.0
d. Cryoprin-associated Periodic Syndromes (CAPS) – ICD10 code not available
*In case you do not treat any condition, please provide the name of the trust you refer these patients to.
Q2. How many patients has your trust/health board treated with Anakinra (Kineret) in the past 12 months, for each of the following:
a. Any medical condition
b. Rheumatoid Arthritis
c. Adult Onset Stills Disease (AOSD)
d. Juvenile Arthritis with Systemic Onset (SJIA)
e. Periodic Fever Syndromes (FMF, TRAPS or MKD)
f. Cryoprin-associated Periodic Syndromes (CAPS)
Q3. How many patients has your trust/health board treated with Canakinumab (Ilaris) in the past 12 months, for each of the following:
a. Any medical condition
b. Adult Onset Stills Disease (AOSD)
c. Juvenile Arthritis with Systemic Onset (SJIA)
d. Periodic Fever Syndromes (FMF, TRAPS or MKD)
e. Cryoprin-associated Periodic Syndromes (CAPS)
Q4. How many patients has your trust/health board treated with Tocilizumab in the past 12 months, for each of the following:
a. Any medical condition
b. Adult Onset Stills Disease (AOSD)
c. Juvenile Arthritis with Systemic Onset (SJIA)
d. Periodic Fever Syndromes (FMF, TRAPS or MKD)
e. Cryoprin-associated Periodic Syndromes (CAPS)
Q5. How many patients has your trust/health board treated with Etanercept in the past 12 months, for each of the following:
a. Any medical condition
b. Adult Onset Stills Disease (AOSD)
c. Juvenile Arthritis with Systemic Onset (SJIA)
d. Periodic Fever Syndromes (FMF, TRAPS or MKD)
e. Cryoprin-associated Periodic Syndromes (CAPS)