By completing this survey you will be providing us with vital information on the experience of patients with cardiac amyloidosis. These results will provide unique insight to engage, educate and inform the medical community on this rare disease .
There are 35 simple questions in all. Please answer ALL of the questions. 

* 1. What type of amyloidosis do you have?

* 3. Do you currently have heart involvement?

* 4. In addition to your heart, do you have any other organ involvement?
Check all that apply.

* 5. Have you ever been hospitalized for your amyloid-related heart problems (i.e., heart failure or rhythm problems)?

* 6. How many times were you hospitalized in the past year for your amyloid-related heart problems?

* 7. Have you had any of the following tests/procedures specifically for your amyloidosis?
Check all that apply.

* 8. How many different doctors did you see before you were diagnosed correctly?

* 9. How many cardiologists did you see before you were diagnosed?

* 10. Was it a cardiologist who correctly diagnosed you?

* 11. Was it the 1st cardiologist that you saw who diagnosed you?

* 12. If not, what kind of doctor diagnosed you?

* 13. How far from your home (in driving or public transit time) was the 1st cardiologist you saw for your symptoms?

* 14. How far from your home (in driving or public transit time) was the doctor who ultimately diagnosed you?

* 15. Have you had to take a plane to consult with any doctors regarding your amyloidosis?

* 16. Were you ever given a misdiagnosis, such as: hypertrophic cardiomyopathy, heart failure with preserved ejection fraction, heart disease due to high blood pressure or another cardiac-related diagnosis?

* 17. Which type of doctor told you that you had something other than amyloidosis (gave you the incorrect diagnosis)? Check all that apply.

* 18. Did you receive any treatment for your misdiagnosed condition?

* 19. Have you been prescribed beta blockers?
Such as :
carvedilol (Coreg)
metoprolol (Lopressor, Toprol XL)

* 20. Have you been prescribed ace inhibitors?
Such as: 
angiotensin receptor blockers (ARBS),
losartan benazepril (Lotensin)
captopril (Capoten)
enalapril (Vasotec, Epaned)
lisinopril (Prinivil, Zestril)

* 21. If you were you prescribed beta blockers or ace inhibitors was this before or after you were correctly diagnosed with amyloidosis?

* 22. If AFTER, are you still taking any of these beta blocker or ace inhibitor medications?

* 23. If a cardiologist missed your diagnosis have you informed him/her that you have amyloidosis?

* 24. Was your local cardiologist knowledgeable about amyloidosis before you were correctly diagnosed?

  high medium low
level of knowledge

* 25. At any point, did your insurance limit you or keep you from seeing an amyloidosis specialist or going to an amyloidosis center of excellence?

* 26. At any point, did your financial situation limit you or keep you from seeing an amyloidosis specialist or going to an amyloidosis center of excellence?

* 27. Has a physician ever diagnosed you with carpal tunnel?

* 29. Which symptoms initially caused you to go to the doctor? Check all that apply.

* 30. Did the degree of your heart involvement limit the choice of treatments available to you?

* 31. Did you go back to the physician(s) who missed the diagnosis to let them know?

* 32. Regarding any doctors who did NOT discover or diagnose your amyloidosis: Would you be willing to send them a letter and a brochure about the disease?

* 33. Are you male or female?

* 35. What is your ethnicity? Please select all that apply.

* 36.
If you would like to learn more about this study, please share your contact details (at least your email address) so we can let you know how this study contributes to the understanding of cardiac diagnosis and education of physicians. Your personal information will NOT be shared with anyone outside the Amyloidosis Research Consortium. 
Thank you so much for taking part in our survey!

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