This is a survey from The NOMID Alliance (nomidalliance.org) for patients with CAPS to better understand the challenges and experiences of patients with this rare autoinflammatory disease. We will be using this information to help with awareness efforts for these diseases. You will remain anonymous, and will not be contacted, or referred to anyone based on this survey.

Any questions? Contact Karen Durrant at karen.nomidalliance.org@gmail.com or call 415-831-8782. Thank you!

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* 1. What form of Cryopyrin-Associated Periodic Syndrome (CAPS) have you, your child or another loved one in your family been diagnosed with by a doctor? Please select the best answer from the choices below.

If you do NOT have CAPS; have CAPS plus another rare disease, or are currently undiagnosed, please indicate your disease(s), or if you are undiagnosed in the box below.

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* 2. What country do you live in in?

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* 3. Do you have CAPS, or are you a parent, spouse or caregiver to someone with CAPS? Please choose an answer below.

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* 4. How many total family members that have CAPS? (including parents, grandparents, children, siblings, aunts, uncles, cousins, etc.) If so, please also indicate how you all are related, and the number affected for each relation in the Comment box. Thank you!

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* 5. What medications are you currently using to treat your CAPS symptoms?

Please list ALL the other medications that you are prescribed to treat CAPS in the comment box, if it is not listed, such as: Other biologic medications (Humira, Enbrel, etc), methotrexate, pain medications, corticosteroids (prednisone, methylprednisone, etc), NSAIDS (naproxen, acetaminophen, ibuprofen, etc.)

You can also comment if you used to take one anakinra, ilaris, rilonacept, but are NOT currently taking it now in the comment box too (and why). Thank you

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* 6. Do you need to take other medications to control your CAPS symptoms, inflammation, rash or pain if you are already taking any of the anti IL-1 medications (anakinra, ilaris, rilonacept)? Please specify the medication, and what it is used for below.

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* 7. Have you had any challenges with getting insurance coverage for your CAPS medications?

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* 8. Did you have to appeal to get your CAPS medication approved?

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* 9. Were you successful in your appeal to get your medication for CAPS?

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* 10. What is your current co-pay for your CAPS medication, or out-of-pocket costs? If you have to pay 100%, please indicate that in the comment box too.)

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* 11. How many different physicians did you have to visit with before the you, your child &/or a loved one was diagnosed with CAPS? (Your best estimate is fine!)

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* 12. What types of medical specialists did you see when seeking a diagnosis?

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* 13. What type of medical specialist made the actual diagnosis of CAPS?

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* 14. How old were you (if you have CAPS), your child or loved one when the diagnosis of CAPS was made?

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* 15. If you are from the United States, which state were you living in when you were diagnosed?

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* 16. Have you ever been able to see a doctor that is considered a specialist in CAPS, or autoinflammatory diseases?

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* 17. If you have been able to see a specialist for CAPS, or autoinflammatory diseases, how far away are they located from your home?

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* 18. How was your experience with trying to get genetic testing, or insurance to cover genetic testing for CAPS, and/or other autoinflammatory diseases?

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* 19. Were you referred to a genetic counselor in coordination with your genetic testing?

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* 20. Have you wanted to speak to a genetic counselor about your genetic disease?

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* 21. Would you support, or have been interested in newborn genetic screening for autoinflammatory diseases, such as for CAPS, if this technology were available? (This is currently NOT available for autoinflammatory diseases, but is a topic of interest in general with the global rare disease community.)

NOTE: This question is NOT asking about fetal testing in-utero, but only about testing after a baby has been born.

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* 22. Do you use any vitamins, supplements, alternative treatments or dietary modifications for your CAPS?

If so, please list them below, and state if they were prescribed by a doctor, your own choice, or suggested by some other type of practictioner.

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* 23. LAST QUESTION: What resources do you refer to or use to the MOST to get information about CAPS, your medications or other CAPS-related needs?

  I use this daily. I use this weekly. I use this for info often. I use this once a month. I use this 2-3 times/year. I use this once a year. I use this rarely. I only used this once. I stopped using this source. I never used this source
Internet search for CAPS information
Drug company website
Printed medical literature from a drug company
Drug company-sponsored informational website about CAPS (such as capscommunity.com, capsconnectsus.com)
rareconnect.org online CAPS community (https://www.rareconnect.org/en/community/caps)
NOMID Alliance website (nomidalliance.org)
NOMID Alliance facebook page (https://www.facebook.com/nomidalliance.org)
NOMID Alliance facebook CAPS patient community (https://www.facebook.com/groups/41019328476)
NOMID Alliance CAPS guidebook in print, or downloaded online (nomidalliance.org/capsguide.php)
NOMID Alliance facebook autoinflamatory group https://www.facebook.com/groups/nomidalliance/)
NORD Rare Disease Database (www.rarediseases.org/rare-disease-information/rare-diseases)
Other organizations dealing with autoinflammatory diseases
Genetic Alliance
Inspire
rareshare.org
Patients Like Me
WebMD
Pub-Med
National Library of Medicine
Orphanet
YouTube search
Other printed source
Other online source

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