Transthyretin amyloid cardiomyopathy (ATTR-CM) - Insights project 2025

Thank you for your interest in participating in this patient insight project conducted by PIPHealth, an independent patient research company, aiming to give patients a voice.

For this project, we want to learn about your experiences of living with ATTR Amyloidosis or Transthyretin Amyloid Cardiomyopathy (ATTR-CM). Therefore, we are looking for individuals living with ATTR-CM or their carers. However, we understand that not everyone recognises this term and that is ok, just let us know on info@piphealth.com if you are diagnosed with Amyloidosis and not sure which type you are.

We are in the process of building a website to support people with ATTR Amyloidosis and would like to hear from you what you think is missing or what can be improved. We will show you the website via a TEAMS meeting which will last for up to 60 minutes, and as a thank you we will pay you £40/€45/$50.

Please answer the following questions, and we will contact you as soon as possible to arrange an interview via Teams or telephone.

Question Title

* 1. Are you diagnosed with a type of amyloidosis or is someone you care for diagnosed with a type of amyloidosis?

I am diagnosed with a type of amyloidosis

I care for someone diagnosed with a type of amyloidosis

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* 2. Below you can see the list of some different types of amyloidosis, please select the one you, or the person you care for, is diagnosed with.

Hereditory or variant ATTR-CM (hATTR-CM)

Wild-type ATTR-CM (wATTR-CM)

ATTR-CM, but unsure of which type

Light chain amyloidosis (AL)

Other or I don't know (please specify)

Question Title

* 3. Who is currently treating you to manage your amyloidosis?

I am under the care of a cardiologist

I am under the care of a neurologist

I am under the care of a haematologist and/or an oncologist

Other (please specify)

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* 4. What type of treatment do you, or the person you care for, receive?

Pills or tablets

Infusion

Chemotherapy

Other (please specify)

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* 5. Did your symptoms, or those of the person you care for, progress slowly (for example, over a few years), or more quickly?

Slowly (over a few years)

More quickly

Other (please specify)

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* 6. What were the main symptoms that you, or the person you care for, experienced in the lead up to your diagnosis?

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* 7. When were you (or the person you care for) first diagnosed with ATTR-CM?

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* 8. How old are you or the person you care for?

Under 18 (screen out)

Please tell us your age

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* 9. Please tell us your gender

Male

Female

I would prefer to not comment

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* 10. Which race/ethnicity best describes you? (Please choose only one.)

Asian or Asian British

Black, Black British, Caribbean or African American

Mixed or multiple ethnic groups

White

I prefer not to answer

Multiple ethnicity / Other (please specify)

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* 11. In which country and region do you live?

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* 12. How often do you, or the person you care for, search for information about the condition?

Often, I am (or the person you care for is) always searching for information about the condition and treatments

Sometimes

Never, as I (or the person I care for) trust(s) the recommendation of the doctor and let him/her handle all aspects of my treatment

Other (please specify)

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* 13. Are you currently a member of any patient advocacy groups or alliances?

No, never been

No, not currently, but was in the past

Yes, I am a member of ......

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* 14. This is an international project and all interviews will be conducted in English.

Would you feel confident taking part in an interview in English?

Yes, English is my first language

Yes, English is not my first language but I am confident speaking English

No, I would need to do the interview in my local language

Question Title

* 1. Are you diagnosed with a type of amyloidosis or is someone you care for diagnosed with a type of amyloidosis?

Question Title

* 2. Below you can see the list of some different types of amyloidosis, please select the one you, or the person you care for, is diagnosed with.

Question Title

* 3. Who is currently treating you to manage your amyloidosis?

Question Title

* 4. What type of treatment do you, or the person you care for, receive?

Question Title

* 5. Did your symptoms, or those of the person you care for, progress slowly (for example, over a few years), or more quickly?

Question Title

* 6. What were the main symptoms that you, or the person you care for, experienced in the lead up to your diagnosis?

Question Title

* 7. When were you (or the person you care for) first diagnosed with ATTR-CM?

Question Title

* 8. How old are you or the person you care for?

Question Title

* 9. Please tell us your gender

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* 10. Which race/ethnicity best describes you? (Please choose only one.)

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* 11. In which country and region do you live?

Question Title

* 12. How often do you, or the person you care for, search for information about the condition?

Question Title

* 13. Are you currently a member of any patient advocacy groups or alliances?

Question Title

* 14. This is an international project and all interviews will be conducted in English. Would you feel confident taking part in an interview in English?

* 14. This is an international project and all interviews will be conducted in English.

Would you feel confident taking part in an interview in English?