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Dear Sir or Madam, please consider taking about 10 minutes to answer this questionnaire.

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Please note that if you are responding as a caregiver, complete this questionnaire with the patient's answers.

At the time of diagnosis, what did your GP know about amyloidosis?

Select one answer

Which doctor mainly prescribes your treatment?

Select one answer

How long does it take you to get to this doctor?

Select one answer

How often are you monitored for amyloidosis treatment?

Select one answer

Which healthcare professionals are currently involved in managing your amyloidosis?

Choose all that apply


How would you rate the information provided to you by healthcare professionals : about your disease?

Rate from 1 star for a very bad information to 10 stars for an excellent information

about the evolution of your disease?

about treatments?

on the impact of amyloidosis on daily life?

on social support options?

on the possibility of psychological support?


What other sources of information do you have about the disease and its treatment options?

Choose all that apply

Do you feel you have a good understanding of the disease?

Select one answer

What questions do you have about your amyloidosis?

Choose all that apply

Type of amyloidosis :

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What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer


What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer


What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer


What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer


What are the specific treatments for your amyloidosis?

This question concerns treatments which treat amyloidosis. This question does not concern treatments of symptoms or other treatments that you can have elsewhere.

Have you ever been on dialysis?

Select one answer


Have you ever had a transplant?

Choose all that apply

Have you ever been part of a clinical trial ?

Choose all that apply

Have you been admitted to the emergency room in the last year due to your amyloidosis?

Select one answer

Apart from amyloidosis, do you suffer from any other serious illnesses?

Select one answer

In total, how many medications are you taking?

Select one answer

What would you like to see improved in the management of your amyloidosis?

Choose all that apply

What complementary therapies do you use?

Choose all that apply

Overall, how would you rate your medical care?

Rate from 1 star for a very bad care to 10 stars for an excellent care


Do you consider that you are well informed about insurance and/or social care?

Select one answer

How would you rate the responsiveness of insurance and/or social organisations?

What would you like to see improved in your social care?

Choose all that apply

Overall, how would you rate your social care?

Rate from 1 star for a very bad care to 10 stars for an excellent care


How did you learn about this study?

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Gender of the patient

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Age of the patient

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Country of residence

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Annual net household income :

Select one answer

Annual net household income :

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Annual net household income :

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Annual net household income :

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Annual net household income :

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Annual net household income :

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Do you live outside a capital city?

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Annual net household income :

Select one answer

Annual net household income :

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Annual net household income :

Select one answer

Annual net household income :

Select one answer
Thank you for your time and your feedback.

As part of the AMYlife study, we value your participation and the insights you've provided. If you feel comfortable and would like to contribute further, we invite you to share more about your journey with amyloidosis. Your story can help raise awareness, foster understanding, and provide support to others facing similar challenges. You can express your wish to be contacted by writing to the following address : amylifestudy@gmail.com


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