Patient Feedback for MAS Clinical Trials

MAS Survey for Clinical Trials Design
The SJIA Foundation is helping researchers gather information to design clinical trials for new drugs for MAS (or Macrophage Activation Syndrome).

Please share your experiences with medications used to treat MAS. This feedback will help make sure that the clinical trial design incorporates patient perspectives.

Your individual responses will be shared anonymously with the researchers. Your name will not be used.

Please fill out this survey. It will not take more than 5 minutes.
I) Basic Info about Patient
1. Your email (will be visible to SJIA Foundation, but will not be shared with researchers)*
example@example.com
I am the patientI am the patient's parent or legal guardian
3. Patient's Country

Street Address

Street Address Line 2

CityState / Province

Postal / Zip CodeCountry
4. How many years old is the patient? (Type in number of years)
YesNoHas a "Maybe" diagnosis
6. How many years since the patient was diagnosed? (Type in number of years)
II) Patient's MAS Background
7. Did the patient have MAS during SJIA / Still's diagnosis? *
(ex. month/year, or just year)
NeverOnce2-3 times4 or more timesOther
YesNoI don't remeber
Persistent high feverVery high or high Ferritin levelLow white blood cell count (Low WBC or leukopenia)Low platelets count (Thrombocytopenia)Other
III) MAS while on Anakinra

Complete this section if the patient has had a full-blown MAS episode while on Anakinra.
Patient was not on AnakinraAnakinra dose was unchanged during MASAnakinra dose was started/increased during MASAnakinra dose was decreased during MASAnakinra dose was stopped during MASOther
12. Do you recall what daily dose of Anakinra patient was on prior to MAS episode? And what was the dose changed to? (you can give anakinra dose as number of syringes, or how many ML)
13. Please tell us more about this MAS episode - what meds ultimately controlled MAS episode?
IV) MAS During the Last Year (2022-2023)
NoYes, one episodeYes, more than one episode
Oral Steroids (corticosteroids, glucocorticoids, prednisone, prednisolone)Anakinra (Kineret)Tocilizumab (Actemra)Canakinumab (Ilaris)Rilonacept (Arcalyst)TacrolimusCyclosporineEmapalumab (Gamifant)Tofacitinib (Xeljanz)Ruxolitinib (Jakafi)Baracitinib (Olumiant)Upadacitinib (Rinvoq)Other
Oral Steroids (corticosteroids, glucocorticoids, prednisone, prednisolone)Anakinra (Kineret)Tocilizumab (Actemra)Canakinumab (Ilaris)Rilonacept (Arcalyst)TacrolimusCyclosporineEmapalumab (Gamifant)Tofacitinib (Xeljanz)Ruxolitinib (Jakafi)Baracitinib (Olumiant)Upadacitinib (Rinvoq)Other
17. Please describe in your own words - how did this MAS episode get started (with an infection, during SJIA diagnosis or other). What medications were used to control MAS? What meds patient on before MAS, what was added, what ultimately controlled the MAS episode.*
V) Last Comments about MAS
18. This is the last question. Please add any comments about MAS medications or clinical trials for MAS.
Should be Empty:

MAS Survey for Clinical Trials Design

I) Basic Info about Patient

II) Patient's MAS Background

III) MAS while on Anakinra

IV) MAS During the Last Year (2022-2023)

V) Last Comments about MAS