Living with hereditary transthyretin amyloidosis (ATTRv) in the United Kingdom of Great Britain and Northern Ireland
A study that sheds light on the perspective of patients and their close relatives
AstraZeneca is currently conducting a scientific study with the aim of increasing knowledge about what it is like to live with hereditary transthyretin amyloidosis (ATTRv) in UK. The study is being conducted in collaboration with Amyloidosis UK and Pumping Marvellous Foundation and support from Cardiomyopathy UK.
The study, which focuses on how people living with the diagnosis ATTRv perceive their quality of life and how they experience the care and treatment they receive, is conducted to increase knowledge about the burden of ATTRv.
The study will also include the perspective of significant others of people diagnosed with ATTRv. A significant other would be a husband, wife, partner or another person living close to someone diagnosed with ATTRv sharing their daily life. There have been some international studies carried out previously on this same topics, but very few studies have looked specifically on the situation in UK.
Participation in the study will include responding to an online survey and answer questions about your ATTRv diagnosis and how your symptoms and treatments affect your quality of life. The survey will take about 30 minutes to complete.
The study will include approximately 70 English people living with ATTRv who will answer an online survey. Of these in total 70 participants, 15 will be invited to participate in a follow-up interview by telephone. Participation in a follow up interview is entirely voluntary. To capture the perspective of significant others/close relatives/supportive friends, those who participate in a telephone interview will be asked if they have a significant other who would be interested in sharing their perspectives in a separate telephone interview. Up to 10 significant others will be invited to participate. Participation in a telephone interview will be remunerated for both patients and significant others.
We are looking for people who:
- are diagnosed with hereditary transthyretin amyloidosis (ATTRv)
- are 18 years and older
- are a resident of United Kingdom of Great Britain and Northern Ireland
If you are interested in participating, are diagnosed with ATTRv and aged over 18, please visit this page and answer a few questions to confirm that you fit the target group. The online survey takes about 30 minutes to complete. You don’t have to be a Patient Association member to participate, as long as you fulfil the inclusion criteria.
This study complies with the relevant laws, regulations and ethics guidelines related to responsible research conduct in the United Kingdom and is carried out on behalf of AstraZeneca, in collaboration with Amyloidosis UK, Pumping Marvellous and support from Cardiomyopathy UK and researchers in the field of ATTRv, by the consulting company IQVIA.
If you have any questions, you are welcome to contact Åsa Lindelöf, contact person at the consulting company IQVIA, which is conducting the study, by e-mail: asa.lindeloef@IQVIA.com.
Thank you in advance for your interest!
AstraZeneca is currently conducting a scientific study with the aim of increasing knowledge about what it is like to live with hereditary transthyretin amyloidosis (ATTRv) in UK. The study is being conducted in collaboration with Amyloidosis UK and Pumping Marvellous Foundation and support from Cardiomyopathy UK.
The study, which focuses on how people living with the diagnosis ATTRv perceive their quality of life and how they experience the care and treatment they receive, is conducted to increase knowledge about the burden of ATTRv.
The study will also include the perspective of significant others of people diagnosed with ATTRv. A significant other would be a husband, wife, partner or another person living close to someone diagnosed with ATTRv sharing their daily life. There have been some international studies carried out previously on this same topics, but very few studies have looked specifically on the situation in UK.
Participation in the study will include responding to an online survey and answer questions about your ATTRv diagnosis and how your symptoms and treatments affect your quality of life. The survey will take about 30 minutes to complete.
The study will include approximately 70 English people living with ATTRv who will answer an online survey. Of these in total 70 participants, 15 will be invited to participate in a follow-up interview by telephone. Participation in a follow up interview is entirely voluntary. To capture the perspective of significant others/close relatives/supportive friends, those who participate in a telephone interview will be asked if they have a significant other who would be interested in sharing their perspectives in a separate telephone interview. Up to 10 significant others will be invited to participate. Participation in a telephone interview will be remunerated for both patients and significant others.
We are looking for people who:
- are diagnosed with hereditary transthyretin amyloidosis (ATTRv)
- are 18 years and older
- are a resident of United Kingdom of Great Britain and Northern Ireland
If you are interested in participating, are diagnosed with ATTRv and aged over 18, please visit this page and answer a few questions to confirm that you fit the target group. The online survey takes about 30 minutes to complete. You don’t have to be a Patient Association member to participate, as long as you fulfil the inclusion criteria.
This study complies with the relevant laws, regulations and ethics guidelines related to responsible research conduct in the United Kingdom and is carried out on behalf of AstraZeneca, in collaboration with Amyloidosis UK, Pumping Marvellous and support from Cardiomyopathy UK and researchers in the field of ATTRv, by the consulting company IQVIA.
If you have any questions, you are welcome to contact Åsa Lindelöf, contact person at the consulting company IQVIA, which is conducting the study, by e-mail: asa.lindeloef@IQVIA.com.
Thank you in advance for your interest!
