VEXAS Syndrome Patient Questionnaire

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1. Name: (Required.)

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2. Please indicate the age range you fall into.

under 18

18-30

31-40

41-50

51-60

61 and older

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3. How would you describe your race/ethnicity? (Select all that apply)

American Indian or Alaska Native

Asian or Asian American

Black or African American

Hispanic or Latino

Middle Eastern or North African

Native Hawaiian or other Pacific Islander

White

Other

Prefer not to answer

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4. In what country do you reside?

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5. In what state/province/city do you reside?

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6. Have you been diagnosed with VEXAS syndrome? (Required.)

Yes

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7. If yes, when were you diagnosed with VEXAS syndrome? (month and year)

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8. What does your VEXAS syndrome care team look like? Please select all that apply or have applied through your diagnosis/treatment journey. (Required.)

Rheumatologist (joints, muscles, and immune system)

Pulmonologist (lungs)

Cardiologist (heart)

Nephrologist (kidneys)

Dermatologist (skin)

Neurologist (brain/nervous system)

Other (please specify)

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9. What gaps or unmet needs still exist for VEXAS syndrome education/resources?

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10. Would you be interested in sharing your experience living with VEXAS syndrome? Please select all that apply.
(Industry could include a pharmaceutical company or market research company)

Focus Group or Advisory Council (if VF-led)

Focus Group or Advisory Council (if industry-led)

Participate in formal or informal in-depth interviews (industry-led)

Sharing your story to be used for social media via blog story or video (if VF-led)

Sharing your story to be used for social media via blog story or video (if industry-led)

Sharing your story at an in-person event (if VF-led)

Sharing your story at an in-person event (if industry-led)

None of the above

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11. If you selected an industry-led selection above, do you grant the VF permission to share your contact information should they seek to connect with patients living with VEXAS syndrome?

Yes

Not Applicable

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12. Please check all activity boxes that apply to you:

I have participated in a clinical trial or study

In the past, I have participated in a patient focus group or been part of a patient advisory council

VEXAS Syndrome Patient Questionnaire

Question Title

1. Name: (Required.)

Question Title

2. Please indicate the age range you fall into.

Question Title

3. How would you describe your race/ethnicity? (Select all that apply)

Question Title

4. In what country do you reside?

Question Title

5. In what state/province/city do you reside?

Question Title

6. Have you been diagnosed with VEXAS syndrome? (Required.)

Question Title

7. If yes, when were you diagnosed with VEXAS syndrome? (month and year)

Question Title

8. What does your VEXAS syndrome care team look like? Please select all that apply or have applied through your diagnosis/treatment journey. (Required.)

Question Title

9. What gaps or unmet needs still exist for VEXAS syndrome education/resources?

Question Title

10. Would you be interested in sharing your experience living with VEXAS syndrome? Please select all that apply.
(Industry could include a pharmaceutical company or market research company)

Question Title

11. If you selected an industry-led selection above, do you grant the VF permission to share your contact information should they seek to connect with patients living with VEXAS syndrome?

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12. Please check all activity boxes that apply to you:

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13. Phone Number:

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14. Email Address:

VEXAS Syndrome Patient Questionnaire

Question Title

* 1. Name: (Required.)

Question Title

* 2. Please indicate the age range you fall into.

Question Title

* 3. How would you describe your race/ethnicity? (Select all that apply)

Question Title

* 4. In what country do you reside?

Question Title

* 5. In what state/province/city do you reside?

Question Title

* 6. Have you been diagnosed with VEXAS syndrome? (Required.)

Question Title

* 7. If yes, when were you diagnosed with VEXAS syndrome? (month and year)

Question Title

* 8. What does your VEXAS syndrome care team look like? Please select all that apply or have applied through your diagnosis/treatment journey. (Required.)

Question Title

* 9. What gaps or unmet needs still exist for VEXAS syndrome education/resources?

Question Title

* 10. Would you be interested in sharing your experience living with VEXAS syndrome? Please select all that apply.(Industry could include a pharmaceutical company or market research company)

Question Title

* 11. If you selected an industry-led selection above, do you grant the VF permission to share your contact information should they seek to connect with patients living with VEXAS syndrome?

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* 12. Please check all activity boxes that apply to you:

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* 13. Phone Number:

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* 14. Email Address:

1. Name: (Required.)

2. Please indicate the age range you fall into.

3. How would you describe your race/ethnicity? (Select all that apply)

4. In what country do you reside?

5. In what state/province/city do you reside?

6. Have you been diagnosed with VEXAS syndrome? (Required.)

7. If yes, when were you diagnosed with VEXAS syndrome? (month and year)

8. What does your VEXAS syndrome care team look like? Please select all that apply or have applied through your diagnosis/treatment journey. (Required.)

9. What gaps or unmet needs still exist for VEXAS syndrome education/resources?

10. Would you be interested in sharing your experience living with VEXAS syndrome? Please select all that apply.
(Industry could include a pharmaceutical company or market research company)

11. If you selected an industry-led selection above, do you grant the VF permission to share your contact information should they seek to connect with patients living with VEXAS syndrome?

12. Please check all activity boxes that apply to you:

13. Phone Number:

14. Email Address: